wigs to wishes.org.uk

The “Dawn Hughes Wigs to Wishes Fund” has been set up to enable me to receive further treatment at an Oncology Clinic in Germany where they have had a high success rate in stopping the spread of Cancer in patients and giving them the best possible chance of remission. The Berkshire Cancer Centre have informed me that there is little chance of my Cancer going into remission with the treatment available in this country.

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.

Thursday, January 29, 2009


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.

Wednesday, January 28, 2009

Bone Scan results

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!

Sunday, January 25, 2009

Reply from the Leonardis Klinik

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.

Friday, January 16, 2009

I might have known!

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.

Wednesday, January 14, 2009

Day Care Centre at the Sue Ryder

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!

Monday, January 12, 2009

Pain relief review at Sue Ryder

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.

Friday, January 09, 2009

Chasing Bone scan date

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!

Wednesday, January 07, 2009

Emailed Leonardis Klinik for help

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.

Monday, January 05, 2009

Sue Ryder visit

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!