Thursday, 20 October 2011

Ronny: the last page

Since writing her last blog on the 6th October, mum has passed peacefully away. Before she did, she asked me to write her blog so everybody would know the last page in her journey.

In the 10 days since her last blog, mum started to feel more tired and breathless, she would spend more time resting and dad would help her to get up and down the stairs. We all put this down to the Chemo, as it is a tough treatment on the body, and encouraged her to rest as much as she needed. During this time, mum began to get very constipated. This constipation carried on, despite her taking Movicol and attempting to relieve the symptoms. As a result, mum found it difficult to eat anything, as she already felt full, and other than the odd smoothie or yoghurt here and there, she stopped eating altogether.

On Thursday, oxygen tanks were brought into the house, one downstairs and one by mum and dad’s bed, so that she could take in extra oxygen before negotiating the stairs, which eased mums breathlessness a lot.

On Saturday 15th October, dad and Stephen took mum into the Hospice so they could check her over and try to relieve the constipation. At this point, we were all very concerned that she hadn’t eaten in a few days, and the hospice is a far nicer environment than the hospital. Dr Katie Taylor checked mum over and suggested that it could be the chemo that was making mum constipated. She didn’t think that it was the meso. Mum went home that afternoon with dad and slept pretty much on and off until the following morning.

On Sunday, we were at home with mum while dad went to church. It was clear that we needed to take mum back to the hospice so they could try and encourage her to eat, we thought they may be able to put her on a drip or fluids of some kind. When dad got back from church, we all went with mum to the hospice where she was seen by Dr Katie Taylor again. Once Dr Katie had checked on mum, she came to speak to us. She told us that the disease had progressed and that mums side effects were more likely to be down to this than the chemo. She told us that they would not be able to put mum on fluids as her body would reject them, and if she was able to digest them she would have been eating orally. She tried to prepare us for the fact that mum was in the last stage of her illness, and that she would not be receiving anymore treatments, only being made more comfortable.

With the whole family there that night, we all spent time with mum, talking to her, telling her how much we love her and holding her hands. She told all of us she loves us and we went home that night. The next morning, we all went back to the hospice and spent time with mum again. We were told she had deteriorated since coming into the hospice, and that she probably only had 2 – 3 days left.

In all honesty, we were shocked and horrified as we just hadn’t taken in how serious it had got. We had all just got back to mum and dad’s house when the hospice rang to tell dad to come back quickly as mum was weakening rapidly. It was too late by the time we got there, the two nurses that were with her told us she died very peacefully, she simply closed her eyes…

We all got to see mum, and they were right, she did look very calm and peaceful.

Mum did not suffer at the end, something I know she worried about, and I’m sure occupies a lot of peoples minds when they know they have a terminal illness. She gave us every bit of fight she had, and I can honestly say that being able to say she is my mum, makes me the proudest daughter in the world. Her bravery, compassion and above all her love for everyone amazed me every day. She told me that she couldn’t have done this without dad, he gave her strength. Me and my brothers are so proud of our parents and are so thankful for the love they have always given us.

Mum and Dad, Mallorca 2009

We know this blog has touched thousands of peoples lives, and we hope that mum has given lots of people the courage to keep fighting. New trials and treatments are being developed all the time, and we all hope that soon this disease can be cured. We want to thank you all from the bottom of our hearts for the love and support you have all given mum, and for the words of love and comfort that you have been sending dad, which have been a huge support for him to read at this time. Mum is an inspiration to many, and she always will be to us.

A special thank you to all the staff, nurses and doctors at Maidstone Oncology, The Heart of Kent Hospice and especially Sandra Wakelin.

Thursday, 6 October 2011

Back on chemotherapy.

After a pretty gutty week I recovered enough for my Oncologist to put me back onto the chemo program, this was such a relief as I feared he would think me too weak. I walked into his office with my head up, shoulders back and a big grin in my face to convince him I was OK. I was able to explain my previous poor week’s condition on the cough, which the anti-biotic seems to have pretty much cleared up. He compared me to how I was when he gave me the 4 – 8 month prognosis and said I seemed so much better, which was very encouraging. He also seemed encouraged that I can feel a lessening of the pressure in my chest, which may be due to the chemo working, or the cough being helped. He has agreed to delay my CT scan for two weeks, to get a better picture of what is going on after three chemo cycles, instead of the two he originally booked for. I was going to have the scan Friday 7th October, but will now wait for the new date.

I am supposed to be going to Germany to see the Prof. on 28th October, but I think I will delay or postpone it until after the chemotherapy finishes for the mesothelioma. I didn’t realise the embolisation stayed in place for two weeks and I don’t want to lessen the effectiveness of the chemotherapy. I will make a decision once I have the final CT scan results.

I am not feeling too bad with the chemo at the moment; the exhaustion and tiredness tend to kick in once I stop the steroids after three days, then I have four days to get fit to take the second tablet of the third cycle.

The main problem I am having is in breathing, I get puffed doing the slightest thing and have to rest for five minutes if I need to get up the stairs. I have tried steroid inhalers but they take my voice away, then I sound pathetic and the Doctors think I am failing again. A catch 22 situation,

We have lost yet another meso warrior this week, and with another in her final days. It is such a waste of innocent lives all for money and greed by the perpetuators of the asbestos industry. It is still not banned in the USA; Canada and Russia are producing tons of the stuff, and third world and developing countries are buying it up as if there is no tomorrow. When will the madness end?

I missed the Uk Mesothelioma Conference where I would have met up with many of my fellow meso warriors and learned of new developments in the pipeline, which are few and far between. They all had a good time and related the new information to me. It seems we don’t even have a mesothelioma Medical Trial database in this country, and there are only a few trials happening here too. It seems we are lagging the rest of the world in this respect.

On a positive note, although two months into my prognosis, I feel no worse so can only hope the goal post have changed a bit, and I may yet defy the odds, as I hope my feloow sufferes will too.

Thank you all so much for the love and support, it really does help.

Friday, 30 September 2011

Chemo delayed.

I have had my two doses of Venorelbine chemo, but I am not recovering so quickly this time. They did increase the dose by 25% and this seems to have made a big difference. It has left me weak and exhausted, sleeping a lot and a bit emotional. I was in this state when I went to the hospital to see the chemo nurse to check I was OK to continue the chem. Although my bloods were good, as I was quite run down, and even wretched while I was with her, she declined to give me the chemo and said to put it off for a week, then see the Oncologist. He is the only person who can stop the course of chemo which worries me a bit if I don’t feel any better. I will go in with a big smile on my face and be as upbeat as possible to persuade him I am fit enough. However, I am improving each day, so fingers crossed.

My persistent cough has not gone so my G.P gave me some antibiotics, which I find makes me sick, this is why I wretched, which happened when with the chemo nurse, confirming her position about my fitness for the chemo. I now take an ant sickness pill at the same time, which seems to be helping, but the cough is not going, so it wasn't a chest infection. My GP thought it wasn't but said the antibiotics won't do me any harm, so worth a try. I have to take the whole course so have to keep taking them until Sunday.

A nurse friend suggested taking Tramacet for the pain and I have some from a previous visit to the Doctor. The packet was full so I had not needed to use any. Within hours of taking the Tramacet I was being very sick and couldn't’t control it with the meds I had. It got so bad we had to call in the Doctor on call and she gave me an injection for the sickness. This too didn’t work, so I went to bed, as lying down seemed to help. I realised that I was allergic to Tramacet as the next morning the sickness had gone. I seem to be allergic to so many helpful drugs, which is a nuisance.

I have had some serous pain and the Hospice Doctor has given me Oxy-norm which works, but leaves me feeling very drowsy. Medicines are all about swings and roundabout, doing some good but giving harsh side effects.

I am now hoping upon hope the oncologist doesn’t take me off the chemo, as this is my last chance of any treatment. He might reduce the dose which would be a disappointment as I want the chemo to work as effectively as possible.

On a brighter note, my little sister if off to Italy, for a couple of weeks with her son, his wife and two year old daughter, but I think they are very anxious for her. I must say I am a bit concerned too as she can’t get insurance and may need treatment whilst she is there. Also her red blood cell count is down to eight, normal is eleven to thirteen. She is to have a transfusion, but not until she returns. However, she is a very brave lady and I admire her courage to make the best of her shortened life.

My picture is of our Grandson Joseph at his first day at school. He looks so grown up but is only four years and two months old, but he is enjoying going and is always happy to get there, so this is good. He went to nursery school so he is used to a long day without Mum and Dad, I think this helped. Also he has started school with a good friend of his and also knows some of the other children from nursery. He certainly looks happy enough.