wigs to wishes.org.uk

MRI Scan appointment

2009-09-08T09:40:00.002Z

Had the letter through this morning with my appointment for 1st October! 5 weeks from when Dr Barrett suggested the scan, some urgency!

As my armpit isn't healing particuarly well, (it's been 13 weeks now since I was admitted to hospital!), I've started on another course of antibiotics last Friday. Today, I've had to stop taking them. I feel so sick I don't know what to do with myself and my breathing is even worse than last week. I'm sure it's the erythromycin tablets making everything worse. Trouble is why is my armpit not healing. There's no answer to that either! Dr Barrett said last week that it could be due to the cancer spread but didn't suggest any investigation to try and clear it up

Had to call the Doctor out again

2009-09-04T09:25:00.001Z

Breathing is still really bad and I'm struggling to walk up and downstairs. The district nurses are visiting everyday to change my armpit dressing and they were concerned this morning so put a call in for the doctor to come and see me.

She checked my oxygen levels and took some blood for a full blood count just in case my Hb levels are low. Oxygen levels seemed okay in the lungs even though I'm struggling. The doctor also gave me my Faslodex injection which is part and parcel of all the cancer treatment.

I haven't had my MRI scan appointment through so as per Dr Barrett's instructions last week I rang her secretary. As usual it went straight to voicemail but when I got to the end of the message saying that I was waiting for the MRI appointment, she picked up the phone and said, quite indignantly that she had nothing to do with the MRI appointments and I should contact them which she was quite happy to put me through. I was only going on what Dr Barrett asked me to do!

Spoke with X-ray and I'm in the system but no appointment yet!

Feeling so sick all the time

2009-08-29T09:22:00.001Z

I'm still feeling really sick due to the spread to the mesentery around the stomach and had to call the out of hours doctors service today because I felt so bad. They gave me an injection and some more antisickness tablets which are helping only slightly. My appetite is completely out the window, I must have lost a lot of weight.

Update from Spinal Surgeon

2009-08-28T09:15:00.000Z

Dr Barrett called me this morning to say that the Spinal Surgeon (he puts rods in your spine) thought that he wouldn't be able to help and that it would not really make any difference to my back problem but he would like me to have an MRI scan to double check and then possibly talk me through why he thinks his procedure wouldn't work. I'm waiting this week for an appointment for the MRI scan. Dr Barrett then went on to say that the Radiologist who deals with the Vertebroplasty is on holiday. So, I'm not really any further forward.

Dr Barrett suggested that if I hadn't had an appointment through for the MRI scan, I should contact her secretary to chase.

Oncology appointment

2009-08-24T08:34:00.000Z

Had a good 35 minute consultation with Dr Barrett this afternoon reviewing all my problems that I thought I had plus something she highlighted that I didn't even know was happening! It was a bit of a shock really because at first I thought she was saying that the cancer had spread to my stomach so that was a shocker but this is not quite the case and the stomach is in fact okay. The cancer has spread to an area around the stomach called the mysentery which are glands or nodes. After explaining the stomach problems I had during my holiday Dr Barrett said that the nodes will be full of cancer and are squeezing and pushing the stomach up which is also affecting my breathing and making me feel very sick. She didn't offer any remedy for this other than anti-sickness tablets which I'm taking but aren't particularly helping.

Then we went on to talk about my posture and back problem which is obviously causing me huge problems and concern. I obviously asked about what could be done and she mentioned an operation called Vertebroplasty http://www.radiologyinfo.org/en/info.cfm?pg=vertebro

She said as it is bank holiday weekend coming up, people are on hols but she will try to speak with the radiologist about this operation and also a spinal surgeon to see if they thought that metal rods into the spine might help! As usual I have to wait for all this. Dr B said she would call by the end of the week with an update on these suggestions.

Hols didn't quite go according to plan!

2009-08-22T17:54:00.000Z

Just returned from a well deserved break in the sun but unfortunately it didn't quite go according to plan. We had a really smooth journey to Spain and we were really pleased with the attention given to our party because I was in a wheelchair. We arrived at our villa on time and were able to enjoy the rest of the afternoon. I had a good 3/4 days enjoyment before spending 6 days in bed with a possible stomach bug and then 7 hours in A&E at the Costa del Sol hospital. Following various chats with the doctors and an x-ray they said that they thought it could possibly be the cancer pushing my stomach up and irritating it. Fortunately I had my E111 card with me and didn't have to pay a penny for any of the treatment.

I did still manage to get out and about on the days that I didn't feel so bad thanks to having the wheelchair as I just couldn't walk very far and we managed to visit a number of nice places including Mijas and Puerto Banus, blimey how the other half live with their flash cars and £30 million pound yachts!

Julie did a marvellous job of dressing my armpit everyday and although we had a few days where it was getting quite bloody we managed to keep it under control. Unfortunately though, there is no change and I still have a massive hole in my armpit with no sign of healing. It did impact my holiday a great deal because I just couldn't swim and therefore no chance of cooling off from the lovely hot sun.

All in all it was lovely to get away, I didn't have to do anything and I didn't have to think about hospital appointments etc. Unfortunately I've returned on a real downer and have been in tears a few times over the last couple of days. I just don't know how I'm going to cope because I can hardly do anything myself any more without being extremely tired and in pain. I can't eat properly and I can't breath. I've got an Oncology appointment on Monday and am hoping to discuss my problems at length with Dr Barrett to see what can be done.

Blood Transfusion at Sue Ryder and admittance

2009-07-31T18:41:00.000Z

I've been feeling very tired and out of breath recently so Sue Ryder thought it would be a good idea to check my blood count and give me a blood transfusion at Day Care on 29th July plus be admitted for a few days respite.

Unbelievably, the blood count for my Haemoglobin was not particularly low at 9.3. I was quite disappointed, I know this sounds funny but I was kind of banking on this being low which would account for why I was feeling so ill. Anyway during my 3 day stay at Sue Ryder I had lots of discussions with the in-house doctors about all my problems. They decided that they could not rule out a blood clot on the lungs because my breathing is so laboured. I was sent for a CT scan at the Berks and got the results this afternoon. Fantastic turnaround for results.

The results ruled out a blood clot in the lungs. There was no sign of changes to the upper part of my liver and the small nodule in my left lung is still measuring 4mm which is good news as I haven't been on any chemo for quite some time. The very bad news is the changes to my bones A number of the vertebra (back bones) have become wedged due to the spread of cancer in the spine which has caused my spine to collapse and therefore bend forward. This is irreversible and I'm absolutely gutted. It's happened so quickly. Because I'm leaning forward, I'm squashing my lungs more which may account for the lack of breath.

There are also healing fractures in my right scapula (right shoulder blade) and in my sternum (front of my chest). This would account for the pains I've been getting in my shoulder blade/back and my chest area. I've got to persevere with the pain medication in the hope that this pain will improve eventually.

Is Erythromycin making me feel worse

2009-07-30T21:32:00.001Z

I've been on the antibiotic for a week now and I've felt sick every morning and my indigestion/heartburt has got really bad. Don't know if this is affecting my breathing as well. The Doctors at Sue Ryder think it would be a good idea to continue with it as there is also improvement in my armpit.

Change of antibiotics for armpit

2009-07-23T21:22:00.002Z

The District Nurse took a swab last week from my armpit. The results have come back that there is a bacterial infection still and that the infection is more sensitive to the antibiotic erythromycin, so I've swopped antibiotics. This infection has been going on for so long now it is ridiculous. The District Nurse is still coming out daily to change the dressing and I'm getting so fed up with it.

Onc appointment

2009-07-09T18:17:00.004Z

Saw Dr Barrett today and she was all smiles. She had a look at my armpit and said that it was looking a lot better than when she last saw it (which was in hospital) and felt that we needed to persevere longer with the antibiotics and dressing. There is still the faint chance that it is more than just an infection in my armpit but she does not want to investigate further yet.

We then discussed the excrutiating pain in my back. I really can't stand for more than a few minutes and walk very far without it really hurting. I'm struggling to support myself and so my back is arching over at the top. I asked whether any type of support brace would help but she said no. I've got a planning appointment on Monday for radiotherapy and she said that this would be the only thing that should relieve the pain. I truly hope so.

My bloods are still good

Slow healing process

2009-07-06T18:11:00.000Z

My GP came out to see me today and had a look at the wound in my armpit. She is disappointed with the slow healing progress and had said that she would like my Oncologist to have a look on Wednesday when I have my next appointment. She has said that it is highly unlikely that it will be cleared up before my holiday and asked if Steve could maybe change the dressing!! Fortunately for me we are going away with my friend Julie and her family. Although she is not a practice nurse, I'm sure she will be able to deal with the dressing better than Steve. I've just got to break the news to her now. At least it's not in an embarressing place!!

Excrutiating pain in my back (Again!!)

2009-07-04T17:59:00.000Z

I got woken up at 2.30am with the most excrutiating pain in the left side of my back. I thought it was my kidneys but it was so painful, I could hardly breathe. I was so uncomfortable lying down that I went to sit in the loung and rang the out of hours doctors service just to get some advice. It truly was the worst pain I've had in recent weeks. I went through with the on-call doctor and he came to the conclusion that it was muscle pain. What have I done this time (who knows!). I couldn't take any more pain relief for it as I'm up to the limit with what I already take, well unless I wanted to be comotosed but that's just not an option for me.

Anyway, I sat in the lounge for about 2 hours as it was more comfortable than in bed and heated by wheat pack to put on my back. I finally went back to bed around 5am.

The District Nurse came out to dress my wound as usual at 9.30am and wasn't happy with the look of it although I had only just started back on antibiotics so she said she would put a call in to the out of hours doctors service and ask them to come and have a look. The doctor finally turned up at 3.30pm and said he thought that maybe the antibiotics needed some extra time to work and would be happy for me to carry on through the weekend and perhaps be reassessed by my own GP on Monday. This was lucky as I wanted to go out this evening to see "Take That" at Wembley.

The District Nurse came back to redress my wound and I did make it to Wembley. "Take That" were great and I'm really grateful to Tanya and Carol for organising this lovely evening out as a treat for me.

Back on 3rd set of antibiotics

2009-07-02T18:09:00.000Z

District Nurse not happy with the look and smell of wound so another round of antibiotics prescribed. I'm getting really disappointed with the lack of progress with the wound. At this rate it's not going to be healed by my holiday in August which means I can't swim. Aaargh!!

Extreme Muscle pain in back

2009-06-30T08:09:00.002Z

Since leaving the hospital a couple of weeks ago (and since the change of pain medication), I've been suffering with a really painful back (yet again). It is on the right hand side and appears to be muscle pain which I think is made worse when I drive, especially changing gears. I have tried to avoid driving for the last week or two because of the pain in my back but there are times when this is difficult and needs must.

The pain has reached unbearable heights in the last few days and I just don't know what to do. The pain medication I'm currently taking is helping with any bone pain but it is not touching the muscle pain in my back. I suppose the pain level is slightly better in the late afternoon but once I've slept I can barely move in bed. I worried Ellie and Freddie this morning because I asked Ellie to help me get up out of bed and I screamed out in pain and started crying. Freddie said he felt sick last night and this morning and it would be so easy to let him stay off school but fortunately Annie was picking him up for me. It's not fair on the kids to see me suffering like this as it really does upset them. I'm not sure what to do about it at the moment but I'm seeing the District Nurse this morning as usual for my dressing change on my armpit which seems to be healing very slowly but going in the right direction. I've also got to speak with Sue Ryder this morning about arranging transport for tomorrow so hopefully I'll get some attention to the pain.

Wound still weeping during the night

2009-06-18T06:14:00.004Z

Although I'm having the dressings changed twice a day at the moment the wound is still managing to leak out during the night which means I'm constantly changing my clothes which is a nuisance. My back is still hurting a great deal, especially over night. When I spoke to the MacMillan Nurse yesterday she said it was probably because we had stopped the Diclofenec. The new pain medications are really helping with the hip pain, of which I haven't really got any but they are not doing anything for the back ache and they are also giving me constipation so I'm not having a good time with it at the moment. I'm also feeling quite sick so have to take the anti-sickness tablets regularly too.

The District Nurse came to clean my wound and reapply new dressing. She said she noticed that the wound had started hardening a little. This afternoon she rang to say that she had spoken to the Doctor and they had advised to start me on a course of antibiotics just in case anything is brewing. The only pain is that they do give me a very bad stomach but I need to keep the wound clean and free of infection otherwise it really won't heal very quickly.

Onc appointment with Dr Barrett

2009-06-17T06:20:00.003Z

Saw Dr Barrett today so that she could keep an eye on me after my admission to hospital last week. She said that we wouldn't be considering any chemo until the infection in my armpit had settled if not totally healed. She did however say that there is a slim chance that it may not heal if it is not definitely an infection and is related to the cancer spreading in the nodes. Although this cannot be ruled out at this stage she said that she wouldn't get any biopsy's done as she needs to give the wound time to heal. If it is cancer related then there may be some radiotherapy in the pipeline.

My platelets were very low today at 60 and my white blood count is very high at 11.23 which is expected and a good thing as my body is fighting the infection.

Discharged from Adelaide

2009-06-15T06:35:00.004Z

My temperature behaved itself over the weekend so I rang to completely discharge myself from Adelaide Ward today.

Apart from not feeling very well last week my stay on Adelaide Ward was a really pleasant experience. Certainly much nicer than 4 years ago when I was on the old Adelaide Ward. The new Adelaide had plenty of nurses and the ward was clean and bright.

I had an appointment with Dr Maeve McKeogh at Sue Ryder today and we discussed my change of pain medication. Dr Maeve was a little concerned that they'd stopped the diclofenec especially as I said that my back was really hurting. It is more muscular than bone pain but since stopping the diclofenec it has got really bad, especially when I've been sleeping. I'm now taking Oxycontin and Oxynorm which are helping with the bone pain but not doing much for my muscle problems.

Semi-Discharge from Adelaide Ward

2009-06-13T06:26:00.003Z

I've had a high temperature in the last 24 hours so although the Dr on Adelaide Ward said I could go home, he said he wasn't happy to completely discharge me as he wanted to save my bed until Monday in case my temperature was not settling, then at least I would be able to come straight back to the Ward rather than going through the GP and CDU (Critical Decision Unit) route.

Dr Draczynski called from the Leonardis Klinik, I had informed them earlier in the week that I was being admitted due to the boils under my armpit. It was comforting to speak with him and it made me feel reassured that everything that could be done had been done. He had some advice on what extra supplements to take to help with the healing process.

Like the Berks, Dr D said there could have been a number of reasons why I got the infection but first and foremost is because my immune system is compromised due to all the treatments I've had and my body obviously couldn't cope. As the Dr's have said at the Berks the wound will heal from the inside out and will take quite a long time, anything from 6-8 weeks (if not more!!!).

So, I've come home feeling really tired and weak with a bad back (too much lying around in bed!).

Not allowed home just yet

2009-06-11T08:29:00.004Z

I thought I might be going home today but in light of the hallucinations and not being able to form sentences properly they decided to keep me in a little longer plus more importantly they're concerned about my kidney function and high calcium levels.

Dr Barrett did her rounds on the Ward today and thought I looked a lot better than the last time I saw her on Monday. She said we can stop the IV antibiotics which is a relief as my stomach is in need of a break! They've been running blood tests everyday and the results have indicated deterioration of my renal function so diclofenec has been stopped as has Tramadol which they think is the reason for the high calcium levels and also the recent hallucinations.

My Haemoglobin levels have dropped to 8.9 since being admitted so I'm having 2 units of blood, Pamidronate to help with the Calcium levels and now they're also giving me saline by the bag. Loads of it.

Hallucinations

2009-06-10T08:18:00.001Z

I started off with a fairly good nights sleep but soon got woken by the wound leaking, so I had another dressing. Unfortunately I hadn't brought many clothes into the hospital as I didn't know what to expect and that I would be getting in a bit of a mess! In the end I had to start wearing the hospital gown which was better than keep spoiling my clothes but someone pointed out that I looked like a dinner lady!!

Following the start of the IV antibiotics by stomach has gone mad (if you know what I mean). It's horrible.

The wound leaked again at lunchtime, so another dressing change. The doctors have also changed my medication slightly as I was complaining that my back was beginning to hurt more. I thought maybe from lying in the bed the majority of the day. They've upped the Tramadol at night.

During the afternoon and evening I started having funny visions and slurring my words. I was seeing images in front of me that actually weren't there. A balloon had been left from a previous patient and I kept seeing things on it when it was a plain balloon. Something obviously wasn't right. I tried sending people txt messages and it was a nightmare. If I did manage to send one, it was either one word because somehow I'd lost the rest of it or I was sending out old messages. I was all over the place and couldn't understand it. I'd had quite a few visitors and I think they must have thought I was going mad (or maybe it's just normal for me!!).

Admitted to Adelaide Ward

2009-06-09T21:43:00.003Z

I rang up the RBH this morning and a bed is available. I decided to email the Leonardis before going in just to let them know what was going on. Christine rang me from the Leonardis to check that I was okay and she said that Dr Draczynski would be in touch to chat over what is going on at the moment.

Went in around midday and was booked in by a doctor and a nurse. I had a bed by a window so it was nice and bright. Such a difference to the old Adelaide Ward. The doctor took a look at the boils and said that they would start me on IV antibiotics straightaway and that a surgeon would probably come and see me later on to discuss the surgery tomorrow. They said that I would have to have a general aneasthetic so it was going to be nil by mouth from midnight. No midnight feasts for me then!! Actually, appetite completely out the window anyway.

Around 6pm a surgeon came to see me and check over the boils. He felt he didn't want to make the decision himself as to whether I should be taken down for surgery tomorrow morning or attempt to withdraw the fluid using a needle and syringe as they did on Friday in Ultrasound. He decided to call upon his senior colleague who would be doing the minor operation. They came back an hour or so later and decided to do it all at my bedside. No anaesthetic!! Well, as I said on Friday, it is very numb in my armpit so I said I'd let them try.

They managed to get more of the fluid out using the needle aspiration method but not very much so with my permission they asked if they could cut the hole open more with scissors where the needle went in. I just said carry on as it still wasn't really hurting and they did say that this would save me having the aneasthetic which was a positive move (I know I'm always sick with anaesthetics so I was quite relieved). A closed pair of scissors were put in the hole and twisted around to make the hole bigger and then the fluid just started gushing out. There was loads of it. Chocolate milkshake coloured. It was still fairly painless at this point. It did start getting a little more painful when the surgeon was putting pressure from left to right of the armpit to encourage as much of the fluid/pus to come out. As there were two boils (one either side of the armpit) it does look like they were connected as all the fluid came out of the first incision.

The surgeons then packed the deep hole with some kind of seaweed gauze (which helps the healing process), covered it with more gauze and then a massive plaster. Job done. Unfortunately they did say that it could take 6-8 weeks to heal! NOOOO!!! What about my swimming and showering. Pain in the you know what!!

Finally have an appointment with Dr Barrett

2009-06-08T20:24:00.001Z

Saw Dr Barrett this afternoon and was finally able to show her the boils under my armpit. She initially said that she wanted me to continue on the antibiotics (which I had been taking for the last 10 days and hadn't really done anything) and she would like to see me on Wednesday before making a decision on whether to admit me and start me on IV antibiotics before considering surgery if the antibiotics hadn't done anything. I started feeling quite dizzy and sick at this point and had to sit down. Steve said that I hadn't been feeling well for weeks and was very lethargic and tired. Dr Barrett said that I could be admitted today but if a bed wasn't available on Adelaide ward, I would have to wait in the CDU unit (clinical decision unit) or I could go home and wait for a bed to be available, hopefully tomorrow. This was the better option. Dr Barrett felt that it could either be an infection or more disease spread which was a bit of a surprise.

At my Wits End

2009-06-05T06:41:00.003Z

Having seen Dr George twice this week about the lumps/boils under my armpit and her attempts to communicate/speak with Dr Barrett's secretary, I made one more attempt to speak with Dr B's secretary myself this morning and again had to leave a voicemail message, so under my own initiative I went up to the Berkshire Cancer Unit at midday and asked to see someone about my lumps. Luckily as it was the end of clinic it wasn't very busy and I managed to see a new Consultant called Dr Fong. He was really nice, chatted about my history and then examined the lumps. He firstly decided to change the antibiotics I was on and gave me a card to send me for an ultrasound to see what was going on. Then he asked Barbara Gray (the clinical nurse in clinic) to contact Dr B's secretary to get me seen in Dr B's clinic on Monday.

Amazingly, Dr B's secretary answers her internal phone calls! When asked if I could be added to the end of the list she said that it was already full and that this wasn't possible. At this point Dr Fong piped up that this woman must be seen on Monday and that if there was any problems with adding me to the end of the list then he would speak with Dr Barrett. Yippee. At last, some action. I was happy with that because my next clinic appointment with Dr B was on Monday 15th and I didn't want to wait another week before my armpit was thoroughly looked at.

I went off to the ultrasound dept and was lucky to be seen within an hour (everything just seemed to go perfectly once Dr Fong had got involved). The radiologist said she could see a lot of fluid and decided to try and draw some off with a needle and syringe. It didn't hurt when the needle went in because the area is already numb. Unfortunately the fluid was very thick and so the radiologist only managed withdraw 15ml. It looked like chocolate milkshake! She said the images would be sent off to Dr Barrett and she would be able to discuss more with me on Monday.

When I got home there was a message on my ansaphone from Dr B's secretary saying that she had received the fax and two voicemail messages from my GP, Dr George and my voicemail message this morning. She went on to say that Dr Barrett felt it wasn't necessary to move my appointment forward and would see me on the 15th!! Unbelievable. Luckily this has been superceded by Dr Fong's request but what am I supposed to do to be seen and get some action. Today has only happened because I went up to the cancer clinic.

Pamidronate and blood transfusion

2009-05-22T17:55:00.003Z

I managed to organise the blood transfusion to be administered at Sue Ryder this week rather than waiting for the Berks possibly next week. I stayed over night on Wednesday so that they could continue to administer the 4 units over the two days.

I came home yesterday but I'm not feeling the benefits yet. I still feel quite tired today and a little sick. Let's hope I pick up over the weekend.

Appointment with Dr Barrett

2009-05-18T17:28:00.001Z

I did finally organise an appointment with Dr Barrett for Monday afternoon although they had to squeeze me in at 1pm. We arrived early for the appointment and only had to wait 5 mins before we were called in.

Dr Barrett's first words were "what have I been up to since I last saw her because my haemoglobin had dropped considerably again". I've not really done a lot although I wasn't surprised when she said this because over the last few days I have been feeling really tired and lethargic again but couldn't quite pinpoint it to a low blood count. Dr B suggested another blood transfusion so this was left to me to organise either at Sue Ryder this week if poss or at the Berks which would probably be next week. I don't really want to wait until next week because it is school half term.

She then went onto say that there was an inevitability about chemo but it was a matter of when was the right time, especially as my bloods had dropped so dramatically again. She suggested that we wait another 4 weeks before making a decision and hoped that my body would recover more before embarking on the chemo. Dr B went through my notes (which was a bit disappointing as I thought she might have done this before our meeting and had a treatment plan in mind!). Anyway, she said that we were running out of chemo options as I had had so many and asked if I'd had certain chemos which I knew I had. She then suggested that we should recycle a couple which I'd had quite a few years ago. I know for a fact that they will make my hair fall out again, which she confirmed. I asked about Herceptin. I haven't had this for a few years and when it was stopped, the theory was that we would save it for a later date when I might need it as it was doing some good at the time. Dr B agreed that we could try this again.

Dr B wants to see me again in 4 weeks and would like to keep to a Monday appointment again. She did however apologise for the fact that my original appointment time got cancelled. She would like to keep continuity for my treatment between herself and Dr Dallas which I'm more than happy with as I've met Dr Dallas on a number of occasions and she is very nice and very capable.

Now all I need to do is speak to Sue Ryder and see if we can organise the blood transfusions over there. Unfortunately Dr B wants 4 units which may mean an overnight stay at Sue Ryder.

Farrah Fawcet's documentary

2009-05-17T17:43:00.002Z

"Farrah's Story" - http://www.msnbc.msn.com/id/30749929/

Follow the above link to see Farrah Fawcett's cancer journey. For me it was so interesting because I've done so much of what she has done with Prof Vogl and Dr Jacob who was originally at the Leonardis Klinik.

If you watch the documentary, especially the treatment she had with Prof Vogl you will understand the pain I went through last year with the chemoembolisation and laser treatment to my liver. It was very painful and I was very sick after it.

I think Alana Stewart did a fantastic job putting this together.

I don't bl**dy believe it!

2009-05-15T08:42:00.002Z

Just when you have the best laid plans an all! On Monday 18th I was supposed to be having an Oncology appointment with Dr Barrett to discuss the way forward and I assume what treatments she thought I should be on next. The last time I saw her she asked me to make the appointment for a Monday when she would have more time to talk this over with me and therefore not a clinic day on a Wednesday when it is a rush job and you barely get 5 minutes to talk.

Well, this morning I've received a call from Dr Barrett's secretary saying that the Monday clinic has been cancelled and can I come in on Wednesday at 10.30! What!! I've had to make so many arrangements for next week this just can't be happening. Steve's booked the day off as we already have another hospital appointment on Monday morning, I was then having my Pamidronate at Sue Ryder on Wednesday on my normal Day Care Centre day so that I didn't have to return to the Berks on Thursday to have it.

So now they want to squeeze me in on clinic day on Wednesday but I thought I needed more time with Dr Barrett for a proper discussion. In the meantime, I've got to rearrange everything.

I've spoken with Barbara, Dr B's clinical nurse and she is going to see if I can be seen on Monday morning. She also asked if I could be seen in clinic on Wednesday and then go off to Sue Ryder for the Pamidronate after that but I don't really want to be trekking all over the place, if I'm already at the Berks then I may as well have the Pamidronate there! What a farce, as usual. They must think that I've got nothing better to do than sit around waiting for appointments. I've not had a great week as it is, I'm still very tired and have lots of aches and pains so I'm not in the most positive frame of mind.

Farrah Fawcet

2009-05-13T09:31:00.002Z

There was a news bulletin on the 6pm news this evening regarding Farrah Fawcett and her battle with cancer. Unfortunately she is now beyond treatment which is very sad. What was very interesting to me was the video diary that she has been doing because she has been going to Germany for treatment and I saw snippets of the diary on the news and recognised two of the German Doctors that she has been treated by. Prof Vogel in Frankfurt and Dr Jacob who was my original doctor at the Leonardis Klinik when I first went there.

I would like to see her Video Diary (A Wing and a Prayer) which is being screened in America on Friday 15th. What is also sad for me is that with all her money and the fact that she has had access to the same Doctors as me in Germany, she is still not going to make it. I suppose I must remember that she has a totally different cancer to myself which I think has been very aggressive but it is a reality check all the same.

CT Scan results - not such good news

2009-04-22T15:14:00.004Z

Went for my Oncology appointment today and CT scan results. Unfortunately not good news. There has been disease progression in the liver and lung although the lung met is only marginally bigger than it was in comparison to the February CT scan. There appears to be 3 tumours in the liver measuring 39x32 mm, 19mm and 16mm. I was a little surprised by this news as I was obviously hoping that there was either no progression or the tumours had shrunk. I'm certainly disappointed but what can I do? I've got to keep a brave face for the kids.

My Oncologist has said that she would like to put chemo on hold for the next 4 weeks due to a low platelet count of 89. It has been this low in the past so not sure why stopping chemo due to that although it's obvious that the chemo isn't containing the spread of the disease (although it may be slowing it down). She has also said that in light of this new spread the PCT (Primary Care Trust) will probably not agree to me continuing with Avastin so I'll be having my last one tomorrow.

The Oncologist wants to see me in 4 weeks, but not at a chemo clinic so that we can have a good chat. In the meantime, I've emailed the Leonardis Klinik with a copy of my scan results and I await to find out what their recommendations may be.

Feeling better

2009-04-16T15:10:00.001Z

Since the blood tranfusions last week, I've been feeling much better. Certainly more energy so I'm able to do the housework and shopping. (How exciting!!) I should have been having chemo today but have postponed it another week which should also make me feel better.

CT Scan

2009-04-09T15:27:00.001Z

Had a CT scan this evening at 7.30pm. I had to drink the white chalky liquid and then when I went in for the scan they couldn't initially get a line in for the dye to be injected but eventually did.

I won't be getting the results for a couple of weeks when it's my next clinic appointment plus it Easter Bank Holiday weekend tomorrow so there's no one around to process the results until next Tuesday anyway.

Blood Transfusions at Sue Ryder

2009-04-07T21:51:00.002Z

I've just spent the last two days at Sue Ryder having a blood transfusion. Four units to be exact. Two yesterday and two today, they each take 3 hours so they wanted me to stay overnight yesterday. It's typical really because I've postponed my next chemo so that I can spend some quality time with the kids in the Easter holidays and then I end up being away for two days.

Anyway, I'm home now and feeling better for it. I hope my energy increases and lasts until the next chemo in two weeks. I see a pattern forming and that this particular chemo regime affects my haemoglobin and therefore I'm so fatigued that I find it hard even going up the stairs without being out of breath and having to take a rest before doing anything!

Feeling really bad

2009-04-04T22:49:00.000Z

Everytime I walk up the stairs I'm totally out of breath and have to sit down and rest. It's a real pain. Everything hurts when I move, legs, body, arms. I suppose I'm expecting a miracle after the blood transfusion on Monday.

Low Haemoglobin

2009-04-03T22:46:00.000Z

My Haemoglobin has dropped to 8.0 from 10.9 last week. That's a dramatic drop in just a week and no wonder I've been feeling so bad. Carol's had to put my line back in to take more blood for a cross match for another blood transfusion which I'm going to have at Sue Ryder next week. I expect I would have to wait too long to get a bed at the Berks.

Fatigue

2009-04-02T22:42:00.000Z

I can't believe how tired I've been for the last 5 days. I seem to have slept loads during the day and still am able to sleep okay at night. It's not right and I'm not sure why I'm so tired but I don't seem to be improving even though I've slept so much recently. I've also been feeling quite ill with it too and I'm feeling weak, I've got bad muscle pains in my back and I can hear my heart pounding in my ears. I've also been suffering with headaches.

I rang my District Nurse today and she's been to take a blood sample because my haemoglobin could be low again.

Chemo Day - Cycle 3

2009-03-26T22:34:00.000Z

Just when you think things are going okay, there's another cock up. I arrived at the chemo suite as 9.30 as usual hoping to start my treatment as soon as possible but no it wasn't meant to be. At approx 10am one of the chemo nurses tells me that there has been a mistake and one of my infusions wasn't ordered yesterday and probably wouldn't be ready until 4pm. I could either come back later and start all the treatments or have it the next day. Aargh!! I opt to have the majority of the treatments today and arrange to come back tomorrow for the delayed drug. What a nightmare, I've spent 3 days at the hospital this week!!

Clinic Appointment at the Berks

2009-03-25T22:29:00.000Z

Went for my clinic appointment today and Heather came with me for moral support and company in case I had a long wait like the last time. It was starting to look like it was going to be a long wait so I asked if I needed to see the doctor. I wanted my blood results, and also to check whether she was going to organise a CT scan other than that I didn't really want to wait around for another two hours. As it turned out, they were trying to fast track a lot of people upstairs to the chemo suite as yet again there was only one doctor on duty.

I did wait about an hour and was seen by the Registrar. I mentioned the pain in my back and she examined me. She said it could be more bone pain and this would be made apparent on my next CT scan which she was going to arrange.

My bloods came back fairly good, especially the haemoglobin which was at a healthy 10.9 so no arrangements were made for a blood transfusion.

HB 10.9
WC 3.71
Platlets 111
Neutrifils 2.08

Pain in my back

2009-03-23T22:24:00.000Z

I went swimming on Friday which I haven't been doing so much of lately. It's hard fitting it in when I've got so many hospital appointments or the line is in my port which means I can't swim. Anyway, I really enjoyed it on Friday but not sure if I've over done it slightly because my back is really hurting. I'll have to mention it to the Oncologist on Wednesday because every ache or pain has to be mentioned.

I went to bed tonight feeling really ill and in a lot of pain. Things change so quickly, last week I was having a good few days and now I'm in pain again and feeling rubbish!

Gradually feeling better

2009-03-18T22:20:00.000Z

I've noticed over the last few days that my energy levels have increased and I'm able to do more activities, even if they are shopping and housework! Today in particular I feel really good. I have my usual weekly visit to the Sue Ryder day care.

The nosebleeds seem to have settled down for now. I think the chemo makes them worse and then they gradually calm down before the next cycle when they get horrendous again.

Blood Transfusions at the Berks

2009-03-10T22:15:00.002Z

Following my low haemaglobin count last week I've been given another blood transfusion at the Berks. Three units this time which takes about 7 hours during which time I have a couple of visitors so it passes the time quite nicely.

Chemo Day - Cycle 2

2009-03-05T21:56:00.000Z

After yesterday's farce in the Cancer Clinic I'm still a little upset but just want to get on with the treatment today. When I arrive, as usual the car park is absolutely jam packed and I have to park on the double yellow lines within the car park.

I check into the chemo suite and 9.30 and am asked to take a seat. There aren't many people waiting at this point but within an hour there is a steady trickle. I'm expecting to be taken in quite quickly because one of my treatments, Pamidronate, is in the fridge and readily available to infuse. Unfortunately this doesn't seem to be the case and other people are going in in front of me how arrived after me. Then Helene, the receptionist asks who signed me in which I'm not sure of her name and she says that my notes aren't upstairs (which is probably why I haven't been called through). She says they must still be downstairs and would I mind going to get them. I'm absolutely flabbergasted and say well not really. She gets a little huffy so I say alright if I have to.

I limp downstairs because my hip and leg still hurt and meet one of the nurses downstairs from the chemo ward collecting my notes. She's puzzled to see me and I said that I was sent down to get them (they should have been sent up after clinic yesterday but there appears to have been a cock up). As usual, it's farce, Jackie asks if I'm okay and I start getting a bit upset and ask who is the patient? I shouldn't be asked to run around looking for my notes. She totally agrees and sends me back upstairs at which point I'm taken into the chemo suite to start my treatment.

I'm so tired of hospital appointments and cock-ups. It's never ending. I'm back again next week for a blood transfusion.

Clinic Appointment/CT Scan results

2009-03-04T15:15:00.004Z

I had an appointment at the Berks today for 10.45. Firstly to confirm that my bloods taken yesterday were okay for chemo tomorrow and also I thought the CT scan results.

3 hours I had to wait before being seen. Ridiculous. I don't normally say anything but felt that if I didn't everyone would be saying how bad it is to wait this long and I should have said something, so I did. Well, it didn't do me any favours, the Oncologist apologised in quite a moody fashion for keeping me waiting for 3 hours but she said she had 34 patients to see and she was the only Oncologist on duty. Then when I went to make my next appointment and the receptionist said 10.45, I obviously said okay but not that it meant anything and that I had to wait around for 3 hours today. She wasn't at all sympathetic and just said that is the way it is and I thought was quite rude to me. Suffice to say, I came away feeling quite upset but also because of the CT scan results .....

Firstly the Oncologist wasn't even going to say anything about the CT scan as there wasn't a copy on my notes, so if I hadn't mentioned them I could have gone way not knowing. Anyway she's given me a copy. Not good. There is another tumour in the liver and the possibility of a tumour in the lung. Too early to tell regarding the lung but the report says there is a 4mm subpleural nodule anteriorly in the right upper lobe of uncertain significance. This may account for the pain in my chest area but who knows.

I have to wait for 3 cycles of the chemo before another scan to see how things are working so it's possible that the chemo will deal with this new spread.

My bloods are okay for chemo but my haemoglobin is dropping again, 8.7 this time so they've scheduled another blood transfusion for Tuesday next week which means organising a blood match on Monday and then spending all day on Tuesday at the hospital. I'm so fed up of hospital appointments!

I'm obviously upset by this latest news, I've had a few tears but I'll bounce back and deal with it as I usually do, I just need a little time to digest it all.

Bloods:

Hb - 8.7
wc - 5.32
Platelets - 103
Neutrifils 3.01

Feeling a bit more normal

2009-03-02T22:32:00.001Z

I seem to have had a couple of good days where I'm not feeling so tired or in pain. The tiredness however does creep in around 4-5 pm just about time for tea, so I need to sit down quite a bit when trying to make the tea.

The nosebleeds are settling down although I do still feel like I have a continuous cold. I assume this is going to be my good week out of the three week chemo cycle as I've got chemo on Thursday this week.

Day Care day at Sue Ryder

2009-02-25T22:06:00.001Z

Spent another day at the Day Care Centre at Sue Ryder. I had some reflexology which was lovely. The nurses are all so nice and make me feel really comfortable. I'm able to chat to them about anything. It's such a relaxing day away from all the stresses of homelife.

I feel like I've been punched in the ribs which I think is a side effect of the new chemo's which say that I may experience aching muscles and joints. It really hurts when I turn over in bed. My chest is also hurting and has been for the last 2-4 weeks.

Nosebleeds

2009-02-22T22:36:00.002Z

The nosebleeds have been really bad since the chemo. I thought they weren't good after each Avastin but they've got worse since starting the chemo. It's a nightmare, I'm getting through loads of tissues. They're worse in the morning and seem to settle down eventually but can start up at any time so I can't go anywhere without some tissues.

Still really tired

2009-02-21T22:29:00.001Z

Although I had the blood transfusion yesterday I was still really tired today and didn't manage to get out of my PJ's till tea time. Everytime I did anything, even walking up and down the stairs I had to sit down and catch my breath and rest. The Haemotology nurses said it would probably take about 48 hours for the blood transfusion to make any difference.

Blood Transfusion

2009-02-20T22:01:00.002Z

Arrived at the Berks at 8.50 and had to wait about an hour before I was hooked up with the first unit of blood. Following yesterday's blood test, my Haemaglobin level has dropped to 7.9. This would account for why I was so tired yesterday. I was so lethargic I just didn't feel like doing anything. The Haematology nurses who were administering the transfusions thought I ought to have 3 units of blood rather than two, each unit can take approximately 2-3 hours to administer so this ended up being a long day.

1st chemo of new regime

2009-02-12T21:48:00.001Z

Started my new chemo regime today of Gemcitabine and Mitoxantrone. (Click on links to see common side effects) Had my usual Pamidronate and Avastin and then the chemos. Gemcitabine is a 1 hour infusion and the Mitoxantrone is given as an injection over about 20 minutes. It's bright blue in colour so I might find my urine change in colour in the next 24 hours.

Again it was another long day and I was really tired by the end of it. Although I've been prescribed anti-sickness and more steroids I'm hoping I don't need them. The chemo nurse said that this combination wasn't necessarily a sicky chemo regime.

Cancer Clinic appointment

2009-02-11T22:15:00.001Z

Didn't get to see Dr Barrett but saw her new Registrar Dr Hill. My bloods have come back okay for chemo but my haemoglobin is low so she thinks it would be sensible to give me a blood transfusion as the chemo may impact it more and then I'll be very tired and lethargic. The chemo is scheduled for tomorrow as the chemo suite is so busy on a Wednesday. Dr Hill also wanted me to go for an ECG as one of the chemos can impact my heart. Just another thing to fit in this afternoon including my CT scan.

Haemoglobin - 9
wbc - 5.73
Platelets - 108
Neutrifils 3.70

Following my clinic appointment I had to rush off for my CT scan booked for 1.15. I arrived at 12.30 so that I could have some lunch which I was assured yesterday would be okay. I thought I'd check anyway about eating, the receptionist wasn't sure. Yesterday the receptionist said it was a new machine and I could eat but today because I double checked, the receptionist wasn't sure. After a 15 minute wait I decided to eat and then got told 15 mins later that I shouldn't eat. Well, she shouldn't have taken 30 mins to tell me, I was starving. Then she had to go back and ask and they just said don't eat anymore. I then had to drink a litre of water for any hour and during that time went for my ECG.

Swimming

2009-01-29T22:25:00.002Z

Just over a week ago I started going swimming. It was at the suggestion of the Occupational Therapist at Sue Ryder as a gentle form of exercise for me as walking is obviously a pain! Anyway, I started last week and initially almost had a heart attack when I couldn't co-ordinate myself in the pool for the first 20 mins. I'd almost forgotten how to swim!! I've now been on 4 occasions and feel that I'm really benefitting from it. I'm very out of breath and obviously very unfit but I do feel so much better for it afterwards.

Sue Ryder have been a great source of help and advice. Today I've been back up there for reflexology with Alison. It's wonderfully relaxing and therapeutic. I can't praise Sue Ryder enough for the boost they have given me and feel so much better for the pain medication review and the overall kindness they have shown me.

Bone Scan results

2009-01-28T21:30:00.003Z

Got the results today. Bit disappointing as there has been further spread. The report reads as follows:

Comparison is made to previous study from May 2008. Today's examination demonstrates disease progression with increased uptake now seen in the calvarium (skull), right shoulder, sacrum and right hip in addition to the previously demonstrated spinal and remaining pelvic metastases.

I gave Dr Barrett a copy of the email received from the Leonardis Klinik and she was quite agreeable to some of the recommendations including organsing a CT scan which will be used as a baseline assessment and to start chemotherapy in two weeks. The Leonardis Klinik suggested 3 different chemo regimes and Dr Barrett was in agreement with two of them so it has been decided that I'll start on Gemzar and Mitoxantrone.

We discussed some of the other suggestions in the email which aren't available in this country. Extreme Drug Resistance Test (EDR). Dr Barrett said she'd heard that Germany were doing these tests on tumour tissue to determine what chemo's work best against your cancer (very similar to the chemosensitivity test which I've had in the past) but this was not available in the UK. She said that she would be trying out chemo's on me anyway regardless of the outcome of any such test because the options are getting a bit thin on the ground!

The email from the Leonardis Klinik also mentioned artemisinin plus photopheresis which are for supportive care. Again these are not readily available here so will have to ask the Leonardis for some further advice regarding this.

So, here we go again, another round of chemo. I was given some information on the chemos and it looks like I won't be losing my hair but who knows what sort of reaction I'll have. It does mean however a long day spent at the Berks receiving treatments because I've still got to have Avastin and Pamidronate. Although these two haven't stabalised the spread in the bones I'm still hoping that they have had some positive effect and that the situation could have been far worse without them!

Reply from the Leonardis Klinik

2009-01-25T21:34:00.000Z

Following my email to the Leonardis Klinik a couple of weeks ago I had a reply today with a fair amount of suggestions regarding the next course of action.

Incidentally, a new Oncologist has taken over from Dr Kopic who has now left. All change again. The new Oncologist is called Tim Rohnisch. He has reviewed my past medical history plus current complaints and has suggested a number of action points including the start of more chemotherapy. He has suggested three different options. I don't know if they are available to me at the Berks so when I meet up with Dr Barrett on Wednesday I'll have to discuss the recommendations.

I might have known!

2009-01-16T23:28:00.000Z

Well, I still haven't had an appointment for a bone scan yet so I decided to ring Medical Physics dept at the Berks to see if they had had any such request which they hadn't. I then rang Dr Barrett's secretary again but got her answer machine. This time I left quite a terse message saying how I'd already left a message last week and it appeared that nothing had been done!

She rang me back 10 mins later and said that she had only just received the letter that day from Dr Maeve. I said I couldn't believe that a letter sent from Sue Ryder could get lost in the system for almost a week, surely it had arrived at the Berks by 9th January having been sent on approximately 6th or 7th. She then took another look and said well actually they did receive it Monday but Dr Barrett is on holiday until Tues 20th Jan. I asked why her Registrar couldn't action the request and firstly she said that she saw that I visited clinic on 31 December and no such request for a bone scan was made then and I said no, Dr Maeve McKeogh from Sue Ryder had suggested the bone scan as per her letter and as per my telephone message a week ago! She then went on to say that the Registrar was new and wasn't completely aware of my case, how rediculous. Do all decisions have to wait for Dr Barrett to return from holiday? As I envisaged, it could take weeks from Dr Maeve's suggestion for a bone scan until the actual time that I get one and in the meantime I'm in a lot of pain. I got a bit angry at this point and reiterated this to Dr B's secretary who suggested that she would try to get hold of the registrar to put a request in for the bone scan or it could be Monday or Tuesday when Dr B returned.

Within a couple of hours, Medical Physics were on the phone to me offering an appointment for a bone scan on Thursday 22 January.

It's amazing that you have to take all this into your own hands. If I'd waited until my clinic appointment next week, there would have been possibly a 3-4 week wait from the time Dr Maeve suggested a bone scan until the point that I had one, then I'd have to wait at least a week for the results although it could turn out to be 3 weeks if I wait until my next clinic appointment and then another 2 weeks before they do anything about the results (nearly 8 weeks!). In the meantime, I can't walk very well, I'm in a lot of pain which needs a lot of pain medication which have their own side effects, loss of appetite, too much sleep, not enough sleep, sickness etc etc.

Day Care Centre at the Sue Ryder

2009-01-14T11:39:00.002Z

I spent a pleasant day at Sue Ryder today with a number of other outpatients, although unfortunately none under 70! This is my second visit to the Day Care Centre. The staff are so nice and gentle and fun. There are always a couple of volunteers also to help during the day. I even get a 3 course lunch which is good because I'm not very good at eating at the moment.

I also had a blood transfusion over a 4 hour period today which I hope will help with my tiredness. The results came back today that my Hb level is 7.9 which is very low. I did have a few comments yesterday that I looked very pale.

Back in August 2008, my Hb was 7.9 but the Berkshire Cancer Unit were really reluctant to give me a blood transfusion and the chemo ward said it may take a week to fit me in for the infusion because they were so busy, yet within 3 days Sue Ryder have checked my blood, ordered the infusion and administered it! It's amazing what a bit of proactiveness does. As it turned out in August 08, I ended up having the blood transfusion in Germany because the Leonardis Klinik thought my Hb count was too low!

Pain relief review at Sue Ryder

2009-01-12T11:35:00.003Z

Saw Dr Maeve again today at the Sue Ryder to discuss how the tablets have been working that she prescribed last week. Unfortunately they are making me so tired that all I want to do is constantly sleep. Nice in someways but not in others because I have a family to deal with and it is not nice for them when I'm constantly in bed.

I'm obviously very sensitive to the opiate type drugs, specifically Morphine and therefore need to rethink. Dr Maeve is aware that Dr Barrett is not keen for me to have steroids at this point as they can be damaging to the bones but she thinks that it may be more beneficial to the pain at this point and also as I'm currently taking a Calcichew supplement this should help guard against bone damage. I know from sterioid use in the past that they can make you gain weight and not sleep very well but I'll give anything a go.

Dr Maeve also suggested a blood transfusion as I've been so tired. Firstly she rang up Haemotology to get my latest blood report from 30 December which said that my HB was 8.9 which is a little low. She said that often the blood transfusion can help in many ways and that 8.9 isn't an unreasonably low count to give it. She took some blood for a cross match and to get an up to date Hb count.

I noticed on my notes at Sue Ryder that Dr Maeve wrote to my GP and Dr Barrett on 6 January regarding our meeting last week and suggesting a bone scan. I still haven't heard back from Dr Barrett's secretary if anything has been arranged yet regarding the bone scan, following the message I left on her answer machine.

Chasing Bone scan date

2009-01-09T23:04:00.001Z

I rang to speak with Dr Barrett's secretary today but all I got was her answer machine so I left a message along the lines that I had been out to see Dr Maeve at Sue Ryder and that she was writing to Dr Barrett to suggest a bone scan. My reason for calling was to speed the matter up. Basically I said that I didn't want to wait until my next clinic appointment on 21 January to be told that "oh yes, we've had a letter, let's now ask for a bone scan appointment". I wanted the wheels in motion and at least have a date by the 21st. We'll see!

I'm so tired all the time, I think I just can't handle morphine based drugs. All I want to do is sleep!

Emailed Leonardis Klinik for help

2009-01-07T22:16:00.002Z

I rang Christine yesterday at the Leonardis Klinik as I'm getting so desparate to sort out this pain in my right leg. She asked me to email them with all the details of what I'm experiencing currently and the medication that I've been trying.

Here's some of the information sent:

Following the x-ray on 3 November, the pain in my right leg started around 16 November 08. I tried combinations of pain relief including paracetamol, oramorph, diclofenec, co-codamol. Today I'm now on a regime of:

drugs for pain - Paracetamol 500mg - 2 tablets 4 times per day
Tramadol 50 mg - 3 times per day
diclofenec SR 75 mg - One in the morning and one at night
Morphine Sulphate Tablets (MST) 10mg - once at night
Nozinan - 25mg - once at night

scale of pain: I am unable to put pressure on the right leg when trying to walk. The pain was usually worse in the morning when I think the pain relief had worn off and therefore slow release diclofenec was prescribed and MST at night. Now the pain is worse in the afternoons and early evenings. The pain moves around the area of my hip but is mainly in the buttock. On a scale of 1-10, it is easily 8. It has now affected the way I walk and it would appear that I have one leg shorter than the other (which of course I haven't but that is how I have started walking to relieve the pain in the right leg).

Possible side effects of pain medication - tired and sleepy during the morning and most part of the day plus feeling a little sick.

There is generally no pain when at rest although sometimes a dull ache/throb in the right leg.

27 November - radiotherapy to left pelvis

23 December - radiotherapy to right pelvis

Radiotherapy has not made any difference to the pain in my right leg.

Hopefully the Leonardis will come back with some suggestions as I'm finding it hard to cope with the constant pain and feeling so tired and ill all the time.

Sue Ryder visit

2009-01-05T11:31:00.003Z

Today was my first visit to Sue Ryder at Nettlebed to meet with Dr Maeve McKeogh, the Palliative Consultant.

She was really nice and wants to help reduce the pain I'm in. She has prescribed more morpine tablets plus longer acting diclofenec to help get me through the night. Dr Maeve thinks that my pains are bone pains and feels we need to organise a bone scan to find the hot spots in order to give targeted radiotherapy. She said she would write a letter to Dr Barrett suggesting this.

I then met up with the Occupational Therapist and the Physio to see how they could help. Deirdre the OT is going to visit me at home on Thursday to look at the house set up to see what equipment might help me around the house. They both suggested a walking aid and when they mentioned a zimmer frame they said my face was a picture. I just can't see myself using one but they have now given me a more suitable frame on wheels. I don't think I'll take it out of the house but it will be handy in doors!

More radiotherapy

2008-12-23T10:46:00.000Z

Was up at the Berks yesterday for the planning of my radiotherapy and then had the actual treatment today. Again, I had approximately 90 seconds (which I think is considered quite a large dose) to front and back of my right pelvis this time.

Possibly having the radiotherapy before christmas wasn't the best timing but I don't think there is going to be a good time and I would rather get it out of the way and hopefully get back to walking normally again. because this has caused me so many problems in other areas of my body as I just have aching muscles all over the place.

Carol Singing

2008-12-22T10:54:00.000Z

My daughter Ellie and her friends wanted to do some carol singing to raise money for my Wigs to Wishes fund so for the last week Ellie has been downloading christmas carol lyrics and printing off song sheets for their little concert.

The girls set off at 6.30pm and visited many neighbouring roads. I think they all had fun along the way. The girls were really pleased with the response they had from people and would like to thank many for their generosity as would I because they managed to raise £150 in the two hours that they sang their carols.

I'd personally like to thank, my daughter Ellie, Ellie Burrows, Amber Taylor, Georgia Burrell, Olivia Morrin, Georgia Newman, Lizzi Gray, Lucy and Isobel Morrin. You must have sung beautifully.

Macmillan Nurse visit

2008-12-17T11:39:00.000Z

My Macmillan nurse came out to see me today. I met Sylvia approximately 3 years ago when I was first diagnosed with secondaries but I suppose at that time didn't feel the need to see her on a regular basis. Today's meeting has come about at Dr Barrett's suggestion and I suppose initially it made me feel that I was giving up slightly but having had a good chat with Sylvia I think that I could benefit from her input.

We chatted about my current situation and the pain I've been suffering and also ways of getting around easier. Possibly a walking stick would be better than the crutches which I do still use occasionally even though I feel they cause me massive muscle problems previously.

Sylvia's suggested that I attend the Sue Ryder Hospice in Nettlebed for a consultation with the palliative doctor, physio and occupational therapist (5/1/09). I think we're just trying to find ways of making my life a little more comfortable because to be honest the last couple of months have been a nightmare!

Increased pain in right leg

2008-12-14T23:16:00.003Z

I've had a terrible weekend which includes not moving far from my bed. It's getting so depressing and I feel so sorry for the kids and it is also putting a lot of stress on Steve. The pain in my right side is increasing and I just don't know what it is. I'm still not able to walk very well but this varies from one hour to the next. I'll have to try and see my GP tomorrow.

Nose Bleed

2008-12-12T23:09:00.001Z

Since yesterday, I've been suffering with really bad nose bleeds, I think this may be connected to the reduced platelet count as I've been looking up low platelet counts on the internet and it suggests that nose bleeds are a common factor.

Also I've got a terrible pain in my left side underneath my left breast, it was on my list to mention to the Oncologist on Wednesday but didn't get round to it because of our depressing chat. I also didn't mention it to Germany either!

Festive Lunch

2008-12-12T22:26:00.001Z

Another successful Festive Lunch in aid of "Wigs to Wishes" was held today. The lunch was attended by approximately 30 ladies, many of whom have supported this event in the past. It was nice to see everyone and it makes me feel so special that these ladies are supporting me.

It was a bit touch and go as to whether I would be attending the lunch due to the health problems I've had lately but I'm glad that I did as I had a wonderful time

As usual we enjoyed good food, fine wine and excellent service from our hosts, you wouldn't get this much attention to detail if it was held in a restaurant. I think we all want to book the girl's in for our Christmas Day lunch also!

I would like to thank, Renee Tyrell, Tracey Hart, Sue Darcy, Liz Hicks, Carly Burn, and Linda Pinker for their continued support and organising such a wonderful lunch and of course to those ladies who so kindly attended the lunch.

I would also like to thank contributors to the lunch including the generous wine donation from Andrew Brown of Ratcliffe and Brown, Waitrose for their £20 gift voucher and a bottle of Cava from the Majestic Wine Warehouse.

Contacted the Leonardis Klinik

2008-12-10T22:58:00.000Z

Following my Oncology appointment this morning, I contacted the Leonardis Klinik. I needed some positive news and I spoke with Dr Draczynski at length. He agrees that I should have the radiotherapy and wonders whether this is just a small pocket of cancer that is not responding so well to the treatment.

When I mentioned the low platelets and neutrofils count following my blood test, Dr D asked whether I could be given something to boost the counts (I think he was talking about a drug called erythropoietin). Unfortunately this isn't usually available at the Berks because I'm sure I've asked about it before but I think I will ask again next time I visit to see what they say if the count is still low.

Oncology appointment - doom and gloom

2008-12-10T22:46:00.000Z

Not a good day at the hospital. Saw Dr Barrett again and the news was not good. My blood count is really low therefore another round of chemo has been postponed. I explained to Dr Barret that I still have terrible problems walking and that although they gave me radiotherapy to my pelvis on the left side two weeks ago, the pain I'm currently experiencing (and was when I last spoke to her) is on my right. She has suggested another shot of radiotherapy to the right side to see if this will help.

I had to ask her what the implications are of this spread in the pelvis as I could understand if it was in the liver or lungs but I thought that it was not so serious if it were in the bones but Dr Barrett said it was just as serious because the bone marrow is contained in the bones and if it is compromised this is not good. She did go on to say that I do have a limited life but as I was on my own she asked me whether I wished her to continue with the conversation and I declined because I'm just not in a good place right now to hear the negative news. She believes that now is the time to call in the Macmillan team who may be able to help me in different ways. She said that we have tried the chemical route and now maybe it is time to make me more comfortable. I agreed with this course of action but was quite upset as I suppose I see this as the next stage. Is it really all going down hill from here?

I went up for my treatment on the chemo ward and chatted at length to Sarah, one of the chemo nurses. She suggested that if I didn't hear from a member of the Macmillan team by Monday that I was to give them a call and they would chase it for me.

Excrutiating pain in my back

2008-12-03T11:24:00.000Z

I woke up Saturday morning with a pain in my back that I don't think I can say I've ever experienced. It was so painful that I couldn't even lift up the iron or kettle and has got progressively worse over the last 4 days. Today I've had to call out the doctor because I really can't move about very easily.

I'm trying all sorts of combinations of pain relief but not with much success. Paracetamol, diclofenec and either tramadol or morphine. The latter two however make me so drowsy that I can't do a lot. Luckily I've had a lot of help from friends with Freddie otherwise I don't think he'd be going to school!

The doctor and I think I've pulled a muscle through use of the crutches. Can't really think that it would be anything else. It's in my left shoulder blade area.

This is all really wearing me down and it's hard trying to remain strong.

Radiotherapy to the left side of pelvis

2008-11-27T11:04:00.000Z

Had some radiotherapy to the left side of my pelvis today following my conversation with Dr Barrett a couple of weeks ago. Confusingly though, the pain is in my right side!

The radiotherapy itself doesn't hurt but there are many side effects that come with it and one I've been warned of is diarrhoea because the radiotherapy is to the pelvis area and it will irritate the bowls. Tiredness is also a large side effect.

Onc appointment plus I have a set of crutches

2008-11-19T22:41:00.000Z

Annie gave me a lift to and from the hospital for my Oncology appointment today as I really can't drive.

Actually saw Dr Barrett today for the 2nd time this year. She thought I looked interestingly pale and said that my blood count was low and was therefore postponing my chemo this cycle. The white blood count was 2.78 which is low but she was more concerned with the neutrifils which were 1.37. She said this would be why I was looking pale and feeling ill and probably why I have an ulcerated tongue. She's going to organise some more radiotherapy to the whole of the pelvis and then sent me on my way to the chemo ward.

On my way upstairs I bumped into Kate, the chemo ward sister who was concerned about the way I was walking (or rather limping). I explained my situation and she asked if anyone had referred me to the physio dept to which I said no. "Right she said, leave it with me for 5 mins and I'll see you upstairs shortly". As it turns out, she rang the Physio dept and they said get a referral letter from my Onc and then send me over there today. Talk about immediate action. Kate is fantastic and I now have a set of crutches which have made all the difference.

The only disappointing part of today was the fact that my MRI report was not available. The scan pictures were but not a report so Dr Barrett is chasing and I may get them next week.

I can't walk

2008-11-18T22:35:00.000Z

I'm in so much pain in my right leg that I can't walk. I had to call in sick at work yesterday and today but resting it doesn't seem to have any affect. The District Nurse was coming to see me today to put my line in for treatment tomorrow and she was concerned with how ill I was feeling. She said she would put a call in for my GP to do a home visit. Just as well because I can't drive. Fortunately I have such kind friends who've been taking Freddie to school and collecting him for me.

The GP arrived late afternoon and assessed the pain. She's decided to up my pain relief and try some Oramorph which is a morphine based liquid. She's also given me a written note to give to my Oncologist tomorrow as she feels this is too much for me to deal with and thinks some more radiotherapy is required.

The pain is so dabilitating and it is getting me down.

Right leg pain and ulcerated tongue

2008-11-16T22:31:00.001Z

I must be really run down because I've got an ulcerated tongue and it is so painful. I tried to attend the out of hours Dr's service on Saturday but the waiting time was so long that I said I'd have to return the next day even though I was in a lot of pain. I've also started getting a lot of pain in my right leg which is unusual seeing as the tumour which usually gives me problems is in my left hip.

Today I managed to see a doctor and he thought that the chemo that I'm currently taking was causing the ulcerated tongue and prescribed me some pellets to dissolve on the ulcers. Unfortunately the ulcers are on the side of my tongue and so I've got to hold them in place. Not the easiest thing to do! I didn't mention my leg problem as I thought it was too complicated!

MRI Scan

2008-11-11T22:28:00.000Z

Had an MRI scan to the abdomen today but won't know the results for at least a week which will coincide with my next clinic appointment at the Berks.

Got a reply from Dr Draczynski regarding the scan results and he would like to wait for the results from the MRI before giving his overall opinion but was quite pleased with the results so far.

X-Ray to the Pelvis

2008-11-10T22:12:00.000Z

Went for an x-ray to the Pelvis on 3/11/08 and got the results from the GP today which reads as follows:

Extensive sclerotic changes seen throughout the bony pelvis and proximal femora consistent with metastatic infiltration. Of note is an incomplete undisplaced transverse fracture through the medial aspect of the left ilium extending to the inferior aspect of the SI joint.

Undisplaced fracture of the left inferior pubic ramus is also noted.

According to the above report the bone mets have spread in the pelvis and are now affecting my pubic bone, so not only have I got a large tumour in the left hip but it is also spreading down my leg and through the pelvis.

I chatted with my GP at some length regarding pain relief as I've been in quite a lot of pain with my back. She's prescribed some different pain killers as I felt that the Tramadol were just making me too dizzy.

I've scanned the results from the x-ray and the CT scan from 16/10/08 and emailed them to the Leonardis Klinik.

Charity Disco Night

2008-10-26T09:49:00.005Z

Another successful, enjoyable night was had by all at the Charity Disco held at the Post Office Club in Richfield Avenue.

We had lots of fantastic raffle prizes donated by so many generous people including:

£200 M&S Hamper - Donated by BBC Monitoring TS&D dept
£100 - M&S Vouchers donated byGeorge Smith, GKS Motors, Binfield Heath
2 x £25 John Lewis Vouchers - Donated by Wendy Hines following a car boot sale in the summer
£25 Peking Palace meal voucher - Donated by Peking Palace
£25 HMV Voucher - donated by Conisboro Garden Services, Caversham
12 Bottles of Wine - Donated by Phillipa Taylor
1 months Gym Subscription - Helen Field
4 Showcase Cinema Tickets - Donated by Phillipa Taylor
Picnic Basket - Donated by Wendy Hines
Bottle of Port - Donated by Waitrose, Caversham
Bottle of Barcardi - Donated by Angie Larkcom
Bottle of Vodka - Donated by Catering Dept at BBC Monitoring
George Foreman Grill - Donated by Budgens Emmer Green
Box of 5 bottles of Sparkling Wine - Dawn Hughes
Crystal Wine Glasses - Donated by Clare
Wine Glasses - Donated by Clare
Wedgewood Candle Holder - Donated by Clare
Garden Hose - Donated by Patricia Blackford
Two bottles of wine and hair straightners - Donated by Caroline Downs

Well done Tanya for organising the Disco Bus Stop, this raised £150 excluding the 1st prize of £75, 2nd prize of £50 and 3rd prize of £25. By sheer fluke Tanya's number was drawn 1st and I would just like to thank her for donating her 1st prize money to the Wigs to Wishes fund.

I would also like to thank Academy Windows for their donation of £50 to the Wigs to Wishes fund and also two separate donations of £100. Thanks guys (you know who you are).

In total we raised £2,534. Absolutely brilliant.

I would like to thank everyone who attended and made it such an enjoyable evening, it was really great to catch up with old friends who I've not seen in such a long time and it's really funny to find that people were also meeting up with long lost friends who didn't know each of them knew me. Small world!!

I'd really like to thank the Post Office Club for the club hire and for being so helpful on the night, Jim and Richard for the disco and last and certainly by no means least Wendy Hines for her tireless fund raising efforts. Without Wendy, a lot of these fund raising events just wouldn't happen and without the generosity of so many people I just wouldn't be receiving this advanced treatment that really is making a huge difference.

CT Scan results - Good news

2008-10-20T20:50:00.002Z

Good news today. Saw Dr Hahnewald and she was pleased to report that there was nothing to be seen on the scan results. The lungs are clear and the chest also. The radiologist who studies the scans mentioned that there is scar tissue on the liver (obviously from the liver ablation in August) and it is possible that one particular area is irritating my diaphragm and therefore making my chest area sore. On the other hand, it could be a chest infection of a virul infection. I am feeling a little better although had a bad nights sleep last night. There doesn't seem to be any rhyme or reason between good days and bad.

She was really happy with the result and said that the news couldn't be any better. Even though we know that the cancer is still in the spine and left hip this is not going to kill me. We need to control the cancer and keep it out of the soft tissue areas (lungs, liver etc).

I'm still suffering with a painful back, particularly in the lower back. Dr Hahnewald said that I could have more radiotherapy to this area but we've decided to wait for a week or two to see how my recovery goes and whether the back pain improves.

As the my chemo was postponed two weeks ago Dr Hahnewald has decided that we can restart it next week at my next clinic appointment.

CT Scan

2008-10-16T21:15:00.000Z

Had a line put in my port this afternoon ahead of the CT scan. I was hoping that they would use this to inject the contrast dye. Unfortunately this was not the case, apparently because the radiologists don't know the port and what it's capabilitities are they can't risk using it. They said that the contrast dye has to be injected at a really high speed. My port may not be big enough to cope with this and it could be damaged. So, two attempts later they managed to get a line in my right arm (which ordinarly they're not supposed to use because I've had a large portion of my lymph nodes removed).

Anyway, the CT scan went well and I will be getting the results on Monday.

Urgent CT scan needed!

2008-10-08T21:34:00.002Z

Cancer clinic was running really behind today, my 9.30 appointment turned in to 11am. I had a good chat with the Registrar. She's now seen the x-ray results and says that there is something showing on my right lung/chest area. It is possibly a lung infection which can be treated by the antibiotics I'm already taking and anti-inflammatories such as diclofenec or Tramadol and paracetamol.

Dr Hahnewald has also decided that as they can't see exactly what it is on my chest area that I need an urgent CT scan so she gave me a card to take to the main x-ray dept to get an appointment. As they can't see what is on the chest area, Dr Hahnewald cannot rule out blood clots on the lungs and therefore has also prescribed a course of injections (Tinzaparin) just as a precaution. The injections have to be made into my stomach area.

She's also decided to postpone my chemo (xeloda) until the CT scan results are available.

Well, this is where the farce begins, firstly I had to go up to the chemo ward to handover my notes so that I was booked in and they could order my Avastin (this usually takes an hour to come up from the pharmacy). Whilst chatting to the chemo nurses they could see that I was in a lot of pain walking (bad back and chest) and looking through my notes they thought it should be an urgent scan that day (in view of the possible blood clots) and they thought I shouldn't be walking all the way over to the x-ray dept so they got a porter to take me in a wheel chair.

When I got to the x-ray dept they said it wasn't an urgent scan but an urgent appointment so I had to go up a floor. The guy making the appointments looked on the system and said he could give me 22nd October, I was a little confused and I said that it was an urgent appointment. He said yes, all urgent appointments have to be seen within 2 weeks and this appointment was exactly 2 weeks. Unbelievable! I went on to say that my Oncologist had already booked an appointment for me to see her next week to discuss the results. He had another look on his screen and said he could offer me a cancellation for Thurs 16th Oct at 6pm (slightly inconvenient due to childcare issues but beggars can't be choosers).

Then I had to go back to the cancer centre to change my appointment and get another prescription for the injections which I'd only had a weeks worth. Unfortunately the Oncologist had left by this point (well it was 12.30) so the clinic nurse said she would call me the following day.

What a nightmare, it was just as well that I'd organised childcare for Freddie after school. I was exhausted and by the time I got called in for my infusions I was ready to have a snooze.

This was one of the longest days I'd spent at the Berks for chemo infusions etc for quite a while.

I also got weighed earlier and I'm now down to 57kg (8st 13lb).

In so much pain from my chest and back

2008-10-06T21:27:00.001Z

I've had such a bad day today that I rang up for an urgent appointment at the GP's today. My chest and back have been so painful I'm struggling to cope with it.

The GP was very understanding, he was hoping that the x-ray results would be available now but unfortunately not. In the absence of the x-ray results he decided to give me some anti-biotics to possibly deal with a chest infection and prescribed some Tramadol for the pain.

Heart palpitations and chest pains

2008-09-29T19:19:00.003Z

I've been getting heart palpitations for about a week and since Thursday have been getting chest pains which have got worse and yesterday it was very uncomfortable. It seems to be since I started the new tablets, Arcoxia and Actos. I've read the leaftlets which come with the drugs and it appears that the possible side effects of Arcoxia are heart palpitations and chest pains. Approximately 1 in 100 people suffer with these side effects.

I haven't taken today's tablet and this evening the pain isn't as bad. I also emailed the Leonardis Klinik this morning to get some advice but have not heard back from them yet.

My back is still hurting and I haven't been able to take ibuprofen because you can't take it with the Arcoxia which is also an anti-inflammatory tablet.

Giving advice re the Leonardis Klinik

2008-09-25T19:24:00.003Z

Christine from the Leonardis Klinik contacted me last week and asked if I would chat to a prospective patient who lives in Canada. I was quite happy to do this and I received a call this evening.

I chatted to Roma and her husband John for just over an hour. They wanted to hear about my experience at the Leonardis Klinik, what it was like there and any advice that I thought would be useful for their trip next week.

I have nothing but praise for the Leonardis Klinik and was happy to chat about my experience and how positive they are. I hope I managed to dispel some of the worry regarding their trip.

Bad Back and cold

2008-09-22T19:32:00.002Z

I've been suffering with a bad back over the last few days and now added to that I've got a cold so not feeling too good at the moment.

I think the bad back is due to the fact that following the liver operations when my stomach and liver area were hurting, I was over compensating by using more of my back muscles, especially when I was sneezing because it hurt so much.

Hopefully with the help of some pain relief it will eventually go.

Started the Arcoxia and Actos

2008-09-19T19:43:00.000Z

At last, got the prescription signed and have now collected and started the new tablets.

Oncology appointment

2008-09-17T19:16:00.001Z

Saw Dr Hahnewald again and said that my GP still hadn't received the letter of approval for the Actos and Arcoxia. She said that they are running a little behind with post!! Instead she printed off a new letter and signed it for me to personally deliver to my GP. At last!!

Dr Hahnewald confirmed the results from the liver ultrasound, that there was nothing to be found and said that was good news.

Started back on Avastin, collected my chemo tablets and also had pamidronate.

Still waiting for letter of approval

2008-09-12T19:13:00.001Z

It's been over two weeks now and the GPs surgery still hasn't received the letter of consent for the Arcoxia and Actos. The RBH postal system is really slow!

Oncology appointment

2008-08-27T19:05:00.000Z

Saw Dr Hahnewald today, she is one of Dr Barrett's registrars and funnily enough is German. She was very interested in my news of the liver remission and I gave her a copy of the treatment plan proposed by the Leonardis Klinik. She was agreeable to the Actos and Arcoxia and said that she would write to my GP giving her consent. I was really pleased.

Avastin is to be resumed in 3 weeks as I have to wait 5 weeks after the laser op before continuing with it.

The Leonardis also recommended I have a liver ultrasound so Dr Hahnewald will organise this for me.

The appointment today went really well. I picked up my next prescription of chemo tablets and had the pamidronate.

Good to be home

2008-08-22T18:57:00.003Z

I've been getting lots of congratulations today but I am being quietly optimistic and positive because although the liver is now in remission, the cancer can so easily creep back in. Anyway it is good news and I'm sure that when I'm feeling so much stronger the positiveness will build and I'll hopefully get back to normal, including returning to work.

Rang my GP today about the Arcoxia and Actos. They're not keen to prescribe these two drugs for me without written consent from the Berks because they are off licence for what I would like them prescribed for. Arcoxia is an anti-inflammatory drug used for osteo-arthritis and Actos is used in diebetic patients who do not require insulin. Dr Kopic told me that there is evidence that these drugs used together can stop cancer cells from spreading by inhibiting the growth of new blood vessels. I'm at the Berks on Wednesday for my usual Oncology appointment so will have to ask them first before going back to Germany and buying it from them if necessary.

I have a reprieve for 6 months!

2008-08-21T18:50:00.000Z

More infusions today which were finished by 2pm which is really quick for me. The line that was put in by my District Nurse on Monday worked a treat so I'll have to ensure that I try and do that each time.

All paperwork was completed today and Dr Kopic gave me my therapy recommendations for the following 6 months. Yep, I don't have to go back now until January when I'll be having my 5th Dendritic Cell Vaccine. Hopefully everything will be okay in between. After discussions with Prof Vogl, Dr Kopic has advised me to have an MRI scan in the UK in 3 months so I'll be requesting one in October. Anyway, the Berks should be doing some sort of restaging with scans and tests of their own.

The therapy recommendations include two new drugs, Arcoxia and Actos. Christine seems to think that I should be able to get these in the UK but will have to wait and see.

Liver is officially in remission .....

2008-08-20T16:56:00.000Z

Well, for the time being anyway.

Started on my usual infusions this morning and then saw Dr Kopic (Oncologist) this afternoon. He did an ultrasound on the liver and confirmed that it is now in remission. I said I hope that we can keep it that way.

He wants to add another drug to my treatment plan which he hopes will help stop the cancer cells from spreading. I've been given a new tablet called Actos which is associated with treatment for diabetes.

I had a blood transfusion this afternoon as my Hb level was down to 7.8. It took ages to administer. I think it was because the blood was so thick. Afterwards I was really red.

Today's the day!

2008-08-19T16:50:00.000Z

Had the laser to the liver this morning at 7am. The operation wasn't anywhere near as painful as last month. They did use sedation but Iwasn't asleep, I think they needed me to be awake to ask questions and check for pain etc. Maybe they also gave me more pain relief this time. The access site was different to before and was on the right side of my body over the liver.

My right shoulder was hurting once again after the operation and they said that it is connected to the liver operation.

Following the operation I stayed in the day unit until 6.30pm and then I went for the MRI scan. Half an hour later Professor Vogl came up to see me and said that the liver is now clear of any tumours and in fact there was only one that could be seen before the op and needed the laser treatment (maybe the chemo I'm on has dealt with one of the tumours). He was pleased and said that he hoped he wouldn't see me for quite some time but I didn't feel that he was confident that I wouldn't see him again which is what I'm hoping for. Prof Vogl also mentioned that there is some fluid in my lungs which needed to be kept an eye on.

Andy, the driver from the Leonardis Klinik then came to collect us for our trip back to the Leonardis. It was pouring with rain the whole journey but I managed to sleep again in his car and still go to sleep in my bed.

Tanya's day was very long because we arrived at the hospital in Frankfurt at 6.30am and we didn't leave until 7.30pm during which time she really had to keep herself occupied whilst I slept most of the time.

Flew out to Germany for 2nd Laser treatment

2008-08-18T16:45:00.001Z

Flew out with Tanya to Frankfurt this evening for my second laser treatment tomorrow on the liver. Had the line put in my port this morning so hopefully the infusions will work faster and maybe I'll be sedated more and pain free! Last time I went I allowed the hospital in Frankfurt to put the line in which wasn't very successful.

Energy levels picked up, Hb dropped again!!

2008-08-15T19:07:00.003Z

Got the results from my blood glucose test which were within normal range so no problem with the sugar levels there. Had the results from my full blood count taken earliar this week and the Hb level has dropped to 8.9. Funnily enough though, starting yesterday, I've been feeling much better with more energy. Just as well really ahead of next weeks op. I'm really quite nervous and anxious. I really don't want it to hurt so much again and then take nearly 4 weeks to get over it.

Evening Post write up for Prince Fun Day

2008-08-06T11:10:00.000Z

The Reading Evening Post did a fantastic write up for the Prince of Wales Fun Day which included a lovely picture of Helen Donahue, Kate Wilson and myself. I've tried finding the article on the internet but it's not listed. Shame.

Really bad week/glucose intolerance test

2008-08-01T19:45:00.001Z

I haven't felt at all well this week. I've been so tired and lethargic, I just can't believe it. I've struggled to do anything without getting over tired after 10 mins. It's a horrible feeling to be this tired.

Had a glucose intolerance test at the GP surgery today because Dr Kopic at the Leonardis Klinik thought that my blood sugar levels have been high for a number of months and this could be a reason for the tiredness and weight loss. I spent two hours at the surgery while I had a blood test before drinking Lucozade and then had to wait for the second blood test to see how my body dealt with the glucose. Won't get the results until sometime next week.

I also had another full blood count test as my Hb was at 9.0 on Wednesday.

I was hoping for the blood test results this evening but they didn't come through.

Oncology appointment

2008-07-30T19:53:00.001Z

Collecting my chemo today and having my pamidronate infusion. Have had to postpone the Avastin for another 4-5 weeks due to my next laser treatment to the liver on 19th August. Avastin can cause heavy internal bleeding so it would be very dangerous to have it and then an operation.

Barbara, the clinic nurse asked how I was feeling as she led me in for my appointment and I said really really tired. She said that explains it and I said what? She said that my Haemoglobin blood level (Hb) was low at 9.0 which means that there is not enough oxygen getting around my body.

Spoke with the Oncologist who wasn't overly worried about the Hb blood count but said that we should retest in 2 weeks in case I need a blood transfusion if the Hb drops anymore.

On the chemo ward the nurses said that I shouldn't leave it two weeks if I'm still feeling really tired. Okay ......

Fantastic, successful Fun Day

2008-07-28T19:12:00.006Z

The Fun Day was an outstanding success yesterday. So many people came to support my cause, many of whom I hadn't met before. Hats off to Kate Wilson and Helen Donahue for pulling off such an event and many thanks for Gary and Niki hosting it at the Prince of Wales. A big thanks goes to Alice Baillie for painting the childrens faces for 5 hours and working really hard getting a lot of the local donations. What a star.

So many people and organisations offered raffle prizes for the day, there are just too many to mention but again thanks. We had some great prizes.

The weather couldn't have been better and the sun shone all day, in fact it was too hot at times!

My thanks also go to the bands who gave up their time for free on the day. James and Mikey from White Sunday, Liam O'B, The Furniture and Headline. Everyone enjoyed the music and what a lovely way to spend a summer's afternoon.

Big thanks to Colin Singh for raising £100 by having his head shaved.

The grand total raised was £1450. This will go such a long way to helping with up and coming treatments

Prince of Wales - Family Fun Day

2008-07-27T10:18:00.003Z

The Fun day commences at 13:00 till late. Live Music throughout the afternoon and evening from Liam O'B, White Sunday (acoustic set) and Headline.

Gary and Niki are doing a Barbeque (all proceeds to the fund) so don't have your lunch before hand!!!

There will be a Bouncy Castle, Face Painting and plenty of other stalls and attractions for the kids. We will also be holding a Raffle and Auction with some fantastic prizes all donated from local businesses. Here's just a taster of prizes / auction items and who donated them:

Digital Camera - Frasers
Car Service (any car) - Gowrings of Reading
Family day out Goldline tickets - Goldline
Leather Bag and Purse set - Marks and SpencerA Reflexology session - Crystal DragonFamily Ski/Snow Board lesson - John Nike Leisuresport complex
Chelsea FC Shirt (2008-2009) and other Chelsea goodies
Makita 96 piece Tool kit - Drews the Ironmongers
Various Vouchers for anything from a Meal for 2 @ various restaurants, to a cut and blow dry to a pole dancing lesson!!!And lots and lots and lots more...............
Toys have also been donated for a kids Tombola by The Entertainer, WordPlay, The Toy Cabin and House of Cards.

Thanks to all the businesses for supporting Wigs To Wishes and thanks to the bands for giving their time for nothing.

Weather's looking good so let's all have a great "fun day".

Still feeling quite ill and in a lot of pain

2008-07-24T15:10:00.002Z

Following the op on Tuesday I think I've gradually felt worse. Dr Kopic has had a look at the liver on the ultrasound and he cannot now see the largest tumour which was lasered on Tuesday. This is great news and the tumour must be making it's way out of my body. There was however a considerable amount of odema (swelling due to fluid). This may be the cause for my discomfort. They've upped the pain relief and are also giving me antibiotics as a precaution against any infection in the wound area.

All I want to do is sleep. Poor Sarah, I haven't been much company for her. The weather has been nice and we haven't been able to get out.

I also seem to have lost more weight and I'm now 61kg (9st 6lb) as apposed to 62.4kg last month.

We met up with some patients that I met on my last trip and they are doing well so it was good to chat with them. They are both from the US.

Sarah and I flew from Munich to Heathrow late this evening. Flight was on time and everything went smoothly. We organised a wheel chair for me at Heathrow which was great because we got through passport control without waiting and I didn't have to walk which I was too tired to do.

Laser Treatment on the liver

2008-07-22T14:51:00.001Z

Arrived at Prof Vogl's clinic at 9.50 for a 10.30 appointment. Paid his secretary for the procedure which was 4,000 Euros (cheaper than I thought) and then had to wait in the waiting area for nearly two hours. Just before I was called in for the procedure, Prof Vogl's secretary called me back again as she has made a mistake and it was 6,000 Euros for the procedure and not 4,000. I did think it was cheap!!

Was taken down for the op at 12.30. Had a CT scan then the op was carried out under the CT scan. A local anaesthetic was injected just under my left breast and then a small incision was made for access to the liver. This was very painful, which I wasn't expecting and so maybe I wasn't given enough sedation. Prof Vogl went through this keyhole incision and accessed my liver this way. I drifted in and out of consciousness and finally was knocked out towards the end of the procedure.

When I eventually came round my mouth was like sandpaper and my shoulders really hurt. I thought it was because throughout the procedure I had to keep both arms above my head but apparently there are nerves in the liver which link to the shoulders.

I was then taken up to the Day Ward where Sarah could join me as she had been sat out in the waiting area for hours. I was so tired that I just kept drifting in and out of sleep. About 4 hours after the operation I was allowed to have some water and a dry biscuit but the minute I sat up and moved my head I started being sick. This happend about 5 times, even when I was taken down for the MRI scan at around 7.30.

Prof Vogl did his rounds and said that he would like me back to deal with the other two tumours. He said he was pleased with the operation but had to get a good clearance around the larger tumour which proved a little more tricky. He said it would not be so bad next time. I can't think about the next time. It all hurts too much and I feel really sick.

Andy arrived to take us to the Leonardis Klinik and once I was settled in the car in a reclining seat I didn't want to move until we had completed the 3 and a half hour journey. I was too scared of being sick again!

Flew out to Germany for Laser treatment

2008-07-21T10:45:00.002Z

Sarah Hurn and I flew out of Heathrow Terminal 5 this evening for our flight to Frankfurt. Everything went smoothly and we arrived at our hotel at 11.30pm where we met up with Debbie Brewer and her friend Janeatte. Debbie is a fellow cancer suffer diagnosed with mesothelioma in November 2006, see her website for more details: http://www.mesothelioma-and-me.com/

Debbie and I have been emailing each other but this was our first opportunity to meet.

She has also been visiting Prof Vogl for chemoembolization to the tumours in her lungs. Let's hope this treatment does give her more time. It has been successful so far in reducing the size of the tumours as it has for myself, hence the next stage for me being the laser treatment.

Still have a very sore throat

2008-07-15T11:05:00.003Z

Had an okay night but my throat is still really hurting. Got up a few times in the night to gargle with the Difflam. The Doctor rang late last night to let me know about the blood test results which he says some of the results are within the normal range but one of them is a little low so he would like to speak with the Berkshire Cancer Centre to get some advice on whether he should prescribe the antibiotics. Meanwhile I'm still suffering!!

I've now also booked the flights for next Monday but this does mean that District Nurse and Hospital appointments will need to be rebooked and it all has a knock on effect. Nothing is ever straightforward.