I knew I hadn’t blogged in a long time but I didn’t realise it had been over two months again. In that time a lot has happened, but it has been a lot of the same really. More recently I haven’t even been writing my diary in the same way I did. Like last time, So I will make this as short as possible to bring you up to date.
I started June suffering quite a lot of pain under my right breast – the same place it has always been, which caused me to go braless once again. I find it embarrassing to have to do this but cannot bear the increased pain. I have tried mastectomy bras because they are softer, no underwires but actually work quite similarly, not like the conventional non-wired bras for the larger busted lady. The pain went on for some time and I was taking regular doses of the breakthrough meds.
Fortunately on 9 June I was admitted to LOROS (our local hospice) where they looked after me for a week and transitioned my medication from morphine based meds to methadone. I have found that it has been a much better pain relief for me. Initially I didn’t get so drowsy with it and generally get better pain relief from it. However, once I was home I spent a lot of time sleeping if I wasn’t actually busy doing something, but I think it was just my body adjusting to it for the most part although I do still ned to sleep after lunch at the very least.
It felt odd being in the hospice as a capable able-bodied person but they have to monitor you while you make the transition to methadone. It has shown me, though, that it is a good place to be when you need it and I know I won’t mind being there.
I do still experience some pain in my ribs – bone pain – which causes me to take breakthrough meds – an extra 2ml of methadone and, more recently, Oromorph. There doesn’t really seem to be much that helps with this pain although I do find a hot wheat bag helps a bit.
This has all been going on while we made the preparations to start the next trial – CONFIRM. This time the great white hope for mesothelioma patients, an immunotherapy drug treatment. I know that it doesn’t work for everyone but knowing how well Mavis did on immunotherapy we all hope. I had a group of appointments at the hospital – MRI scan, CT scan and workup for the trial all on one day. Once that was finished I walked into town to Debenhams to try and make a start on organising an afternoon tea with them to raise money for the charity. By the time I had done that I was quite tired and sat with a cup of tea for a rest for a bit. Then it was time too walk up to a pub where some old work colleagues were having a retirement party. By the time I got there the pain in my ribs and under my breast were bothering me quite a lot but I stayed for a couple of hours. I hoped it would ease over night because we were due to be going to Bury St Edmunds for the weekend so that we could participate in their Action Mesothelioma Day. I was to release the doves and Jerry was to read a poem. However, it was not to be.
When I woke on the Saturday morning the pain was still quite intense and not eased by the normal meds. Even when I was able to take top-up meds it didn’t help. I was also being sick. We decided to call 111 and ended up with the emergency GP who decided that, although I wasn’t having a heart attack all the signs were such and so he called and emergency ambulance. I had 8 minutes to pack a bag and no brain cells to tell me what to put in it! The ambulance was able to take me to Glenfield rather than A&E where they treat heart and lung emergencies. It was some time before they had done all of the tests but they were able to control top-up meds better than I can at home and eventually they decided that I had an infection somewhere as all the infection markers were up. They gave me antibiotics and admitted me. For the first time mesothelioma had put me in hospital! I stayed in for 5 days before they decided I was fit to go home again, although I felt after 2 days once the pain was under control I could have gone home.
I made sure that I didn’t let my own team down on Action Mesothelioma Day as I was presenting my update on my progress over the last year, especially in relation to the trials as there was a talk on trials for treatment of mesothelioma. Once again, much to my own disappointment I was in tears towards the end and had some of my audience in tears with me. I did a short interview for the BBC and this became part of an article they were doing on the evening news.
Since before I had been in hospital my appetite had gone again and I was struggling to eat once again. I am sure it is the pain that sets it off. By this time the pain had subsided so it wasn’t causing me to take too much top-up medication. I was still very sleepy though and struggling to stay awake. I had talked with the oncology team and they had decided that the infection – which was still being treated – wouldn’t stop me starting the trial as planned. I was also getting quite a lot of pain in the whole of my right side although fortunately not as bad as when I was hospitalised. On top of this I had low back pain which was causing me considerable trouble too.
In the end all was set and I had my first dose of the trial drug on 20 July – I was just hoping it wouldn’t be the placebo again. We were preparing to go away with our grandsons to the caravan in Rhyl so they had been down to sort out the toys and books they wanted to take from our house. I still had back pain and rib pain and was spending a lot of time asleep. All this meant very little appetite still and the dietician has now prescribed food supplements – Fortisips – which I am supposed to take twice a day. I was hoping that I would be able to be fit enough to enjoy the holiday.
When I went for the blood tests for the second dose of drug I also had a PICC line fitted – I can’t face them keep putting canulas in my hand. I also had to start antibiotics again as they thought I had an infection again and I had to be booked in for another blood transfusion. So the next day when I went for the treatment about half way in I felt faint and had chest pains so they stopped the treatment while they gave me anti-histamine and saline. I also had a visit by a doctor who decided that they could restart the treatment at half speed. This worked well and I finished the treatment – definitely the drug not the placebo! The next day I went for the transfusion and was back home mid afternoon full of beans and working on getting things ready for the holiday. By the next morning my energy had all gone and I had pain in my ribs again – certainly unable to concentrate on what I needed to do. By the time my daughter arrived at the caravan with my grandsons I was feeling quite poorly and Jerry ended up doing most of the child care – plus one adult – for the week. I ate very little and was unable to enjoy my holiday. Fortunately the boys didn’t mind that we didn’t go out much – although we did manage a couple of days on the beach when the weather allowed. They enjoyed the camp activities and playing in the caravan.
By the time we got back home again I was starting to feel much better although still not eating much. It was soon time for infusion three of the drug and I faced it with some trepidation but they had prepared anti-histamine before the drug and set it at half speed. However, there was a mishap and the bag containing the drug split and we had to wait for it to be remade which took about another two and half hours. About half an hour after the infusion started I had pain in my chest and couldn’t breathe. Once again I had a collection of nurses and a doctor to help me through, which fortunately didn’t take that long. It was decided that I could restart the infusion but I immediately went into reaction so I’m afraid that is the end of the trial for me. Now I am waiting for the result of my CT scan to see if the three infusions I had helped at all. Once we have that result we will have to make some decisions about where we go from here.
I have been seeing a specialist about nerve block treatment for the pain I get under my bust. We have decided to try a treatment with capsaicin which they apply as a pad to the area for about 30 minutes and the effect then lasts about 3 months. I am still waiting for an appointment for it so I will report that on a later blog.
One of our recent MELU lunch club meetings was a talk by an oncologist and a surgeon. Turned out the surgeon was the one who had assisted at my operation. In the intervening years he has been in a variety of posts in other hospitals but was delighted to see me there. Not many of his mesothelioma patients live that long after surgery!
Once again I found myself involved in fund raising and was instrumental in getting the afternoon tea at Debenhams organised and publicity out. It took a while to get ticket sales moving but in the end we sold over 70 tickets. Debenhams put on a lovely tea for us and a capsule wardrobe demonstration as well as a make up demonstration and make overs for two ladies. All this was very well received and the evening ended with guests being given 20% discount in the shop. All together we raised over £600 so worthwhile but exhausting for me.
I have now started to see a counsellor to help me to deal with everything that is going on. She has been very good and helped me no en, she helps me to put things in perspective. For a long time I have managed to deal with things on my own but it is finally time to stop trying to be strong!
With a break now while we wait to decide what to do we are finally taking a holiday. I have put it off for so long while we went through different treatments but this time we actually booked. We are off to Kos in a little over a fortnight – can’t wait!