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.
When I last wrote on 19 May I talked about a problem with severe stomach pains when we got back from holiday. Well, two weeks later the pains were back and, after two days I started vomiting too. It was like nothing I had ever seen before, and in huge quantities – half a litre at least. This happened over the weekend, so Monday morning I was on the phone to get an appointment with my GP that evening. In the meantime I was sick a couple of times, once at my beauty therapist’s. It’s a very good job she is my friend too! My GP sent me straight to A&E where after several hours waiting I was finally admitted about midnight. The next morning they put a nasogastric tube in to stop me being sick and I became nil by mouth. Constant saline drips kept me hydrated. After 3 days of this ‘drip and suck’ and X-ray and CT scan they told me I had a bowel obstruction – my bowel was telescoping in on itself. This treatment fixes 50% of cases so it was fingers crossed or I would be having an operation to remove part of my bowel. Fortunately after 5 days it seemed to have pretty much sorted itself out so another couple of days drinking and then a little food the consultant decided I was fit to go home. However, she warned me it could happen again. Now I am in constant fear of that.
Still, I seem to be recovering quite well so we just have to keep our fingers crossed. I am not in any pain from the Meso and have finally dropped off the paracetamol – I couldn’t take any of my drugs while I was nil by mouth so when I could take them I left out the paracetamol. Just pregabelin now.
I was really surprised at how weak I was when I got out of hospital. I had taken the advice of the Meso specialist nurse and walked the corridors as much as possible but it didn’t prepare me for not being able to climb the stairs without towing myself up on the handrail. In the 9 days since I came out I have tried to make sure I walk every day – up to just over a mile today – and it is helping. I need to do lots of exercise though to regain my strength.
I also still have a problem with low HB and low iron, although it was recorded at 87 the day I came home. They put me on iron tablets but they have contributed to how bad my stomach feels so the oncologist stopped them when I saw him yesterday. They took another blood test and we will see next week where we are.
The day I was admitted to hospital I also had an iron infusion. It had been planned and they decided that I was fit enough to have the infusion – they didn’t know at the time what was wrong. I suspect I may end up back there again.
My cough continues. My GP thinks that it may be related to excess stomach acid so at the moment we are trying remedies for that. So far they don’t seem to be working.
In the time since I last wrote I have met up with two other fellow sufferers. Helen lives down on the south coast and we became friends when she wanted to talk to someone who had had surgery. That was three years ago and she is still doing very well and travelling as much as possible while she can. The other one I only met this week. Julie lives in Carlisle and has no support in her area that she can find. So when she got herself referred to. Prof Fennell I managed to arrange to meet up with her. She is very worried because after surgery a couple of years ago her cancer is back. I assured her that this happens to all of us and she couldn’t be in better hands. Prof will always have a plan.
Two days after I was released from hospital my husband and I went up to my daughter’s to look after our grandsons. This had been long planned and I was really looking forward to it. In hospital I was worried that I wouldn’t be able to go at all but I did manage to go, just not able to get as involved as I would have liked. My daughter and her husband were on holiday with the other grandparents taking most of the week – we were fortunately just picking up the last couple of days. I suspect that the next time we see them will be when they come to us for a week at the end of August.
So, no photos this time – I don’t seem to have been anywhere to take any. I will try to do better next time – as long as life treats me better than over the last month!
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.
Last month when I wrote I had been experiencing low energy levels and this got progressively worse – although I hadn’t recognised it. Ten days ago when I was going to meet my friends for lunch I suddenly had a light bulb moment and realised that this was possibly due to a drop in my haemoglobin levels. It is a problem I had last year and had two transfusions last summer but with the success of the last trial levels returned to something approaching normal. However, a blood test last Tuesday showed that it was down to 72 – from 95 in September 2017. I had planned to ask for the blood test to establish whether I was right but it wasn’t necessary, six months after I had my last dose of the CONFIRM trial it was time for some follow up. I was booked in for two units of blood just two days later. It was a very long boring day but I did feel better the next day. Not the ‘running around like a two year old’ that people always talk about but definitely an improvement on what I had been. I now have to try and keep my iron intake up, and vitamin C too as this aids the absorption of the iron. We already eat a lot of the things that they tell you to eat though so I am going to embark on a course of iron tablets and see how we go.
The other thing we got from this visit to the oncologist was the news that my latest CT scan is again stable. Unfortunately there were no measurements on this scan report, which was the case on the last one too. So they have specifically requested that the report on the next one gives the measurements. However, it still means that against the odds the small amount of immunotherapy I received last July/August is still working! In fact the letter to my GP from the January consultation said I am in remission! This is not something we mesothelioma patients hear very often.
I do still seem to have a hangover from an earlier trial last year and that is an overactive bladder. It is particularly bad at the moment and I am waking up to six times in the night as well as visiting the loo multiple times during the day. I guess that is something else to take to my GP when things settle down after Easter.
We had intended to visit my sister at the beginning of March but were unable to due to snow – it was much worse for her down in Somerset than for us in Leicestershire. We rearranged it for a couple of weeks later and were nearly halted by snow again. Fortunately we managed to make it down there before the snow arrived and it didn’t hang around too long. We managed to visit Wells Cathedral while we were there. It was very interesting but I was very low and unable to enjoy it to its full.
I have had a cough now for over a month. It is not a chesty cough or anything I am concerned about but it is a nuisance. It is a silly tickly cough which I think is caused by post nasal drip – I have had a runny nose for ages. I don’t know how to cure it and I am thoroughly fed up of it!
The other change to my life recently is the addition of hearing aids. I have had low level hearing loss for ages which seems to have been aggravated by chemo. So I finally bit the bullet and got the hearing aids. They have made a huge improvement – I hadn’t realised how deaf I was – but I have had a problem with feedback. Apparently it is the sound escaping from the ear canal because the ends don’t fit tightly enough. They have been unable to sort it out with the conventional tube and cone so I am waiting for ear moulds. This fills the whole of the ear shell and should hopefully sort out the problem. We shall see.
Wow, cold like I remember from my childhood. We have been very lucky and not had much snow here in Leicester but boy has it been cold. I haven’t had warm hands and feet for weeks and these last few days have certainly not helped. Still, it is winter and we should expect cold weather. The weather has affected a couple of my plans – lunch with old workmates today and a visit to my sister early next week have both had to be shelved until later in the month. Otherwise it hasn’t affected me much.
I went and saw my palliative care doctor this week and discussed with her what actions I have taken with regard to my medication in view of the good state of my health at the moment. She was very pleased that I had come off the methadone and that I had tried to reduce the paracetamol. Unfortunately the latter brought a resurgence of the nerve pain under my right breast so I have reinstated it. It is a small price to pay to keep that pain at bay. It does still bother me sometimes but generally not too much. She agreed that I had done the right thing so now I don’t see her for another 3 months.
I have also taken part in another fashion show this week, exactly a year after the first time I did it. This time it was in aid of a prostate cancer charity and so we had quite a few men taking part which was very good. Unfortunately the bad weather kept some of my friends away so I didn’t get any photos of me to share with you except for one of the preparations and this one where I am with a few of the other ladies who take part. All looking very grand in our wedding guest outfits.
I have been test driving some cars over the last few weeks as we are looking to upgrade ours to something with a bigger boot. The car we currently have is very difficult to get a wheelchair into and we want something that will make that easier and also will allow us to fit suitcases in better. Unfortunately they are all very similar and it comes down to bells and whistles – which one has most of what you like and all of what you want. In the end we weren’t able to get everything from what we looked at so the project is shelved until I can motivate to look a bit wider or Vauxhall decide that they can fit a rear view camera into the lower spec Grandland X.
My health continues to rumble along quite nicely. Everyone comments on how well I look, and I guess after how low I got last year I must look better. I would say though that I don’t have a lot of energy and have to do things in short bursts with lots of sitting in between. Not sure whether that is a consequence of the treatment or the fact that I have spent so long doing nothing. Either way I am hoping for a better summer this year and maybe even the chance to play bowls.