Linda was diagnosed with mesothelioma in February 2014. Her life history is that she worked in a dry cleaning store in the early 1970’s and all of the pipe work associated with the steam presses was lagged with asbestos. This blog describes her life journey.
It’s been a while since I last wrote and I have been in and out of hospital throughout that time. Some of it with the bowel problem and some of it with an extreme pain in my back which limited my breathing. When that started, in the middle of the night, I also had a panic attack, although I didn’t recognise it as such at the time. They suspected I may have had a blood clot having recently had multiple attempts to get a canula into me – mostly without success. However, retrospectively I believe it was just the effect of sleeping in a draft which tightened up all the wrong muscles.
The rest of my visits to hospital have been related to my bowel problem. After the first obstruction things never really cleared up and I was in a lot of pain a lot of the time. In the end I had a second obstruction which the surgeon said wouldn’t clear itself and so he was going to operate. I was left with information on colostomy bags and stoma as I could well have needed one after the surgery. Fortunately they managed to gut the offending bit of bowel out and stitch it back without the need for that. I was home after about 5 days and making a good recovery until I got an infection in the wound. Then it was back in while they sorted that out. I am currently having daily visits from the district nurse to pack and dress it so that it can heal. Life is never easy!
I have also had some feedback on the operation and been told that the polyps in the bit of bowel they removed were mesothelioma. They said they have removed them completely with clear margin so at least I don’t have to worry about them for now. However it does raise a few questions, not least because it is something very unusual so that even Dean Fennell has not come across anything like it before.
All of this has left me very weak and so I need to build myself back up again. I also need to regain some weight having lost 2 stones again this year. In fact I weigh less now than I did as a teenager! It is not a good look but I am having a lot of trouble eating enough to make a difference. Now that the wound is healing again I am going to try and walk every day and see what I can do.
A couple of weeks ago I was supposed to go to a reunion of the youth theatre that I belonged to as a teenager. Unfortunately my health prevented it and so I never got to meet up with them all – 40+ years later they all look very different.
My cough also continues to plague me and is contributing to my current weak state. I wish someone could find something to fix it as sometimes I can be coughing for hours without let up.
This week was my oncology visit. I was supposed to have had a scan but that hasn’t materialised so there was no new information in that regard. However, a year down the line from the last treatment I had and I don’t feel that the Meso is changing at the moment. Scan before the next clinic appointment.
So, life isn’t that brilliant at the moment. I can’t book any holidays or even any days out all the time I have the district nurse coming every day as you never know what time they are coming. Hopefully by the end of this week we will be down to alternate days and I can hope for my trip to Kos before the end of the season.
Finally after a long wet, and sometimes very cold, winter spring has arrived. Last year I had my garden redesigned into a low maintenance garden and lost a lot of the lovely flowers and shrubs that were there. However, I did manage to save a beautiful rhododendron and two magnolia trees. They came into flower and really cheered me up. They were also supposed to save my camellias but that didn’t happen so now I have two new ones which have still to establish themselves. I have also continued the rhododendron theme into the remaining few beds of the garden with one exception. This was an oleander, reminiscent of our time in Cyprus and love of Greek islands, which flourished when moved to its new position. Unfortunately it looks like the cold weather has killed it off so I will have to find something else to put there. In the meantime it is amazing where all the weeds come from!
My health continues to be a bit erratic with continued low blood HB, an iron level of 1 – when it should be between 14 and 21, and a cough that just won’t seem to go away. After the blood transfusion at Easter I should have been more energised for a few weeks at least. However, in no time at all I felt that I was back to square one. This proved to be the case with and HB level of 74 so they tested for thyroid function as a possible cause. Turns out thyroid is normal so then it was testing iron level and there was the problem. Unfortunately all of this was only identified two days before our holiday so there was no time for a blood transfusion boost this time. We had to settle for iron tablets and steroids to see me through. I am also waiting for another CT scan to try and find out the cause of the continuing cough. Although I have to say that two weeks on steroids seem to have settled it down and since we got back from our holiday I seem to only cough when there is a change in temperature.
We had a lovely 10 days in Kos staying in the same apartments that we have stayed in before. The family there are very welcoming and will do anything to help. The season is only just starting there and already they are fully booked until the middle of September. Many of their guests are returners and we met up with another couple who had been there last year when we were there. We also met another couple who live only a few miles from us. As my energy level was quite low we didn’t do very much but we did hire a car for a few days and went out to visit some of the places we visited when we first went there. One of my favourite trips was to Therma which is a hot water spring in the sea. It was very relaxing although you had to be careful not to burn your feet on the hot sand as you get in and out! When we left I had to climb a short hill back to the car – by the time I got to the top I could barely put one foot in front of the other! Combination of total relaxation in the spa, warm sunshine and low energy. I do make a fairly quick recovery though so it is not all bad news. I didn’t take any photos of places while we were away but I did photograph some beautiful bougainvillea – a flower I love but which is much too susceptible to the cold to flourish here.
We got home about 11:30 on Wednesday night and I started to unpack and get the first load of washing on while I drank my very welcome cup of tea before bed. Once in bed it was not long before I started to get stabbing pains in my abdomen. Nothing I did helped and I had no stronger medication than the paracetamol I take anyway so there followed a very uncomfortable night. I managed to get an emergency appointment with my GP Thursday afternoon and dozed my way through the day until then. I even had to cancel a hair appointment as I couldn’t face it! My GP diagnosed gastritis brought on by steroids and minor stomach upset and gave me codeine for the pain. We were supposed to meet up with visiting family that night, the only possible night to do it, but I just couldn’t face going out so my husband had to go without me. Unfortunately the codeine didn’t hit the pain either so a second uncomfortable night followed. However, by the next morning I did feel I was starting to recover and managed to eat both lunch and dinner on Friday. In fact by bedtime on Friday I felt I was returning to normal. Was it just the whole travelling home, change of climate – it was only 8 degrees when we landed, general upset thing? I know last year I ended up in hospital with uncontrolled pain after a series of bad decisions and I wonder whether similar circumstances nearly put me there again. My GP said he had a low threshold for admitting me under the circumstances!
Now that I am fully recovered I have been able to finish the unpacking, do all of the washing – but not the ironing yet, and do the shopping. I have to be careful not to try and do too much though which is not easy for me as I can see all of the things that need doing and want to get on with them. Still I have sat out in the garden and dozed for an hour this afternoon. I am so glad we have some decent sunshine at the moment to welcome us home.
Through April I did seem to have a lot of problems with both bladder and bowels. Turns out I had a bladder infection which some antibiotics sorted out. My bowels though are a law unto themselves. I don’t think they ever recovered from the first campylobacter infection years ago and having suffered at least one more since then I have learned to live with unpredictability. All this did mean though that I felt pretty under the weather for much of the month in which both my husband and I celebrated our birthdays – or rather didn’t celebrate. I didn’t feel like going out at all and I guess it was largely down to the low HB and these infections. I don’t like to accept that I am ill, it is not something I do well.
I went up to stay with my daughter for a few days so that I could spend a little time with them. They have such busy lives, as you would expect from a family with children, that it is hard to find the time to spend together. This was a welcome opportunity when she wasn’t at work and we managed a girlie shopping day at the Trafford Centre. I found it quite exhausting though.
I collected my ear mould hearing aids last month and have found them very strange. Ordinary hearing aids felt weird enough but this is even worse. They are taking some getting used to as it feels like you are shut off from the world a bit. Rather like if you have ear plugs in for flying. Still I have to persevere now, at least the feedback has stopped.
So, that’s the last six weeks. I wonder what the next six weeks will bring.
Here we are, back to what passes for normal these days. I am very pleased to say that I am feeling very well and, from what other people say, I am looking good too. The visit to the oncologist on 9 January told me that the report from the scan taken before Christmas did not give any numbers just that there was no change in any of the areas measured. After the year I had last year I will take that! I now don’t have to see them again until the beginning of April with a scan about a week before that. Then we will see how things are. In the meantime I mean to make the most of my new found freedom!
We have just returned from a week in Marrakech. It was colder than I had expected at about 16 degrees most days. Although I had not expected wall to wall sunshine I wasn’t actually prepared for it to be that cold. And it would seem that the hotel didn’t have the ability to deal with it either as most public areas and rooms were colder than was comfortable. Still it was a very interesting place and we enjoyed ourselves all the same.
We visited a waterfall in the Middle Atlas Mountains called Ouzoud Falls. Unfortunately it was a steep descent to the bottom and back up again so we contented ourselves with stopping about a third of the way down and kept company with some Barbary Apes while we waited. After lunch we visited a cave, or rather a natural bridge and then back to the hotel in time for dinner.
Our second organised tour was of the historic sites of Marrakech – the Koutoubia Mosque, Bahia Palace, Saadian Tombs and the Berber Museum. Not bad for a half day!
We visited the Djaan El Fna independently three times, once at night, as it was just a short distance from our hotel. There we saw snake charmers, traditional musicians and acrobats as well as a man with a couple of small hawks and some other birds. At night the centre of the square is also a hub for street food. We didn’t try any though as we had been more than adequately catered for in our hotel.
We also visited the Jardin Marjorelle which is otherwise known as the Yves St Laurent Gardens as it was redesigned by him in the early 1960’s when he found it abandoned and overgrown. It was a beautiful, peaceful place in the middle of a very busy city but unfortunately we had left it until our last day to go and it was dull and overcast. Still, we appreciated it even if the photos aren’t as good as they could be. Now that we are home we will be starting to think about our next trip.
At the end of February I will be modelling for Debenhams again in a fashion show in aid of Prostaid. I have missed the last two shows due to being away at the time so it will be good to be back again.
I haven’t been walking as much as I had planned. I am only able to walk a couple of miles, which also disappoints me. At the moment I am unable to sustain any level of activity for long. I have started to try and do some exercises to improve the strength in my arms too. Not so much success with that either! I guess I am not so good at keeping my resolutions! I figure that any activity is better than no activity though so I will persevere with doing it as and when I can.
While we were away my pain has been well under control and so it is now time to lose the methadone completely – I will stop from tomorrow. I hope that, for a while at least, I will be able to get by on just Paracetamol and Pregabelin. That was all I needed until last year so it is time to get back there while I still can, I have not experienced any pain for some time with the exception of muscular aches and pains consistent with my age and activities. It is hard to believe that I feel so good now when I have felt so bad. I will be eternally grateful for my short time on the CONFIRM trial which has given me back my life. It may only be a for a short time but we know now that immunotherapy works for me. My oncologist assures me that there will be other treatments coming up so when I need it I am optimistic that something else for me to try. Who knew that only 3 doses of a drug could do so much good!
At the beginning of 2017 I was between treatments and my cancer was still growing. I was waiting to start the Epizyme trial and so started a year of ups and downs. I am ready to start 2018 on a much more positive note with the last trial still showing positive results. Since I was taken off the trial in August I have had 3 scans all showing tumour reduction, albeit small ones in the first and last! Consequently I am not in treatment at the moment, just a watch and wait to see when something further is required. This is a remarkable reaction and totally unexpected, by me and the medical team. It also means that I can get on with my life without constant rounds of hospital appointments for tests and treatments.
At the time of writing this I don’t know when my next scan will be but I suspect it will be sometime towards the end of March unless my body indicates that things may be moving again. I feel remarkably well although I don’t have much energy or stamina. This is the result of a year spent more down than up and so I was very inactive. I plan to push myself to get fitter next year.
I started this year intending to walk for at least half an hour every day. It didn’t last long! I wonder if I can do it next year. I am also doing some work with weights to try and put some strength back into my arm muscles. Not an easy task.
Today I have made a start on walking again and managed about a mile and a quarter with no difficulty. I will try and push it up to about two miles tomorrow I think then see how I am. I walk round the lakes near my house and so distances I can choose to walk are a bit dictated by the paths round them. I used to walk round some of the longer routes not so long ago so it shouldn’t be too hard.
I am over two stones lighter than I was this time last year – not entirely a bad thing as I was very overweight before. This means that I have had to fit myself out with a new wardrobe of clothes but is also one of the reasons for the lack of energy. I am back in to a size 14 – which I haven’t been for more years than I care to remember.
So, I am planning what to do with my freedom. First is a trip to Marrakech on 12 January. After that I am hoping to do both Rome and Berlin before the summer starts. I have been promising those to myself for a while now and so I think it is time to get on with it. I have a few longer distance trips I would like to do too – Hawaii, Australia, Singapore, Grand Canyon and a return to New Zealand. However, I am not confident enough to book any of those yet!
Last year marked a significant birthday – I was 65 and at the time I wasn’t sure I was going to live to see 66! However, an upturn has seen me where I am today with the hope that I will live to see the next significant birthday.
Tomorrow I am seeing my palliative care doctor and I hope she will help me to come off the methadone. I have been on half dose for the last couple of months but it depends whether she wants to keep a level of it in my system. It is a more complex start and end procedure than for morphine. I don’t really want to take any of those sort of drugs to Morocco!
Although my health has not been the best this year I have continued to work on raising awareness of mesothelioma and helping people who have been diagnosed to make choices about what route to take. To this end I have spoken at the Action Mesothelioma day in Leicester for the second year. This was used on both radio and TV to support an article raised by DAST. I have been approached to do a third year next year to continue to update people on my experiences of living with trials. I have also recently spoken about my life with mesothelioma on local radio as part of publicity for the opening of the new Mesothelioma UK offices in Leicester. This brings them even closer to my home and I am almost able to walk there. This will make my time volunteering for them even easier. I so appreciate the help and support they give that I feel giving them a few hours of my time while I am able to is the least I can do.
I am aware that I have been a very erratic blogger for a lot of 2017 but I hope to be able to write more regular posts next year – if I can find something interesting to say!
So I would like to end by saying that I hope you have all had an enjoyable Christmas and that you have a very happy New Year!