Thanks for taking the time to visit my website. I'd like to tell you a little bit about myself. I'm a wife and mother of 3 young children, Matthew 13, Ellie 10 and Freddie 6. I was first diagnosed with Breast Cancer in 2001 at the age of 36. Following Chemotherapy and Radiotherapy, I was in remission until a chance MRI scan in Feb 2005 for an unrelated problem, detected that the Cancer had returned. I was then diagnosed with Secondary Breast Cancer. The likely prognosis given in February was 18 months to 5 years. I then had to undergo aggressive Chemotherapy, but following the results of a recent bone scan, it was found that the Cancer is still spreading.
The treatment in Germany will cost thousands of pounds and for most people like myself, the opportunity for this is a dream. Many of my Family and Friends want to make this dream a reality and are making tremendous fund raising efforts, because without them, I would not be able to seek the treatment that I so obviously need and which is not being offered in this country.
MRI Scan appointment
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
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
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
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
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=vertebroShe 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!
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
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
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
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
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
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!!)
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
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
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
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
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
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
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
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
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!!).
