Happy New Year

Happy New Year to all of my readers.  I hope that we will all find something to benefit us and start to turn the tide for Meso patients.  For me the year is starting very well.  I am still waiting for the official scan results but a preliminary report shows no change in my tumours.  I won’t get the official result until 9 January and then I hope to find out what the measurements are so that I know which way things are going.  I will also be told then when my next scan will be and when they want to see me back in clinic again.  It does mean that we will have the freedom to do what we want for a while.  Once I have been to clinic again I will plan the next place to visit after Marrakech.

Writing my blog more often is one of many resolutions I am starting the year with.  For the most part it is getting into a routine of doing things.  My health last year caused me to spend a lot of time sitting in my chair and so I need to make a concerted effort to change that habit.  I plan to do at least one domestic chore every day.  Normal house cleaning has been divided into 3 sections (we made the house bigger a little over a year ago) so I am not planning to do too much in any one day.  It also means that I have plans to do some the things that we don’t do very often, like cleaning the oven!

I have also resolved to walk every day.  This is a resolution I made last year and managed to keep for about 2 months before my health took over and I stopped doing it.  I hope to be able to continue longer this year.  I managed to do 1.5 miles yesterday and 1.8 miles today.  I am also doing exercises with dumbbells to improved the strength of my arms.  That is something I have always been sadly lacking and since I lost weight the bingo wings look worse than ever.  I can’t do many reps yet but doing it regularly should help me to be able to increase that.

It is now a little over a week until we go to Marrakech.  I am really looking forward to going now.  I have been to my doctor’s surgery today to get a letter from him confirming that the drugs that I will be taking with me are prescribed for me.  I am not keen to enter Morocco with morphine based drugs without it!

I was advised by the palliative care doctor to stay on the methadone at least until we get back from holiday.  I have reduced the amount I take again though – I am now on 1.5ml twice a day which requires very careful measuring!  As long as I don’t experience any pain problems I will try stopping all together when we get back.  When I started taking this I never really thought I would get off it again.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Looking forward to 2018

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.

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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!

 

Good News

This week I saw the oncologist to get the result of my latest CT scan and see what, if anything, he may be able to offer in the way of treatment.  We didn’t think there was anything really so I was geared up to ask him to give chemo again when we get back from holiday.  In the event he beat us to it and was talking about a chemo regime that wasn’t as aggressive as the one I had before but should help to reduce the tumour.  He was very conscious of the fact my tumour had grown continuously since this time last year, through several trials.  In fact he was very keen to get one treatment in before we go away although he planned a reduced dose so that I wasn’t ill.  I was all ready to sign up to it being grateful that there is something I can have – and he got in before me with it!

Before I signed up though I asked for the results of the scan.  He had a look at the scan and said that it was stable.  Knowing what ‘stable’ can mean I asked him in this case what it meant.  So he looked at the actual numbers and after a few moments he said we won’t be doing the chemo yet.  The tumour was actually reducing!  Not by much – it was well within the 20% tolerance that gives a stable result, but a reduction none the less.  I couldn’t believe it.  The first thing that works and I’m allergic to it!  Still, it may continue to work which is why we are waiting for the next CT scan when I get back from holiday to see whether we start another treatment or not.  Prof did say he would talk to the drug company about my reactions and whether there was anything that could be done so we’ll see.

In the meantime I feel a lot better – it’s amazing what a bit of good news can do for you! Probably helped along by a few steroids.  I am still sleeping every afternoon – unless I am out doing something, but I am going to spend the next week trying to improve my fitness and staying power a bit before we go away.  I would like to have some stamina to do more than sit by the pool!

When we get home I will have to dedicate myself to cleaning the house – it has been sadly neglected for a long time now and I have got out of the habit!  So it is in dire need of attention and I will only have about 2 weeks to do it in as my son is coming over from South Africa. I am very pleased that he and his wife will be able to come over and I know they don’t actually care whether the house is clean or not but I need to do it  for me. It is an incentive to finally get all the bags of clothing down to the charity shop.  I think I am up to 5 or 6 bags now so it’s time to reclaim the space – that will certainly make a difference.  He has decided he wants to be here for Bonfire Night so I guess I have about 2 weeks!

Not a Good Blogger

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.

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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.

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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!

Where does the time go?

I have just found that I last wrote a blog almost 2 months ago.  I know that initially I was waiting for scan results and things to be able to write a more definitive blog that told you all what was happening but that definitive position never really seemed to arrive and my life is still very much in limbo.  So I guess I have to write chronologically – the good and the bad and bring you all up to date.  I haven’t even really posted normal posts on Facebook so in the words of my friends – I have been very quiet, which is not like me at all!

When I last wrote in April we had just had our kitchen finished and were preparing to make use of it.  We are now well established and I think we have found homes for all the things we use.  This means that all the things we don’t use must now go to the charity shop.  I have replaced some things that I think go with the new kitchen better too.  One important thing I haven’t done anything about is a clock that used to be on the wall.  Both Jerry and I keep looking at it – even though it isn’t there – where there is a perfectly good clock on the oven.  Do we replace it or do we persevere without?  The jury is still out.

Final jobs have now been completed, I have a shelf in the utility room and, finally, a carpet in my hall, stairs and landing.  That only got fitted on Friday so we spent many weeks stabbing our feet on gripper rods.  Once I get to putting things back in there and removing stuff to the charity shop I can finally call my house my home again.

I have even had the garden done so that it is as low maintenance as possible and I am actually quite pleased with how it looks – very different to previous years when there were a multitude of vegetables and fruit growing there.  Still, I have to be realistic, I know I can’t manage it any more.

When I last wrote in April I was on the Epizyme trial and life was becoming very difficult for me.  The drug and the increased morphine pain relief combined to make me almost comatose most of the time.  I was unfit to do anything at all and had to hand my car keys over to my husband – a major step as I am fiercely independent.  I had been experiencing quite a lot of aching type pains down my right side which were new but only seemed to be when I woke in the morning.  I was unable a lot of the time to make any decisions on what food I wanted to eat and was virtually unable to prepare it.   This is not what was needed when I am losing weight anyway.  I am now down to having lost almost 2 stone in the last year.  In some ways I am pleased because I was well overweight but I know that I need to stop now.  During this later period on the Epizyme trial I really felt that y life was slipping away.  Was this going to be how it all ends?  Up to now I had been very positive and quite active and leading a relatively normal life – where did it all go so suddenly?

I had a spa day with friends on my 65th birthday then, a few weeks later one with my daughter.  I don’t feel I was able to make the most of either of them as I just wanted to sleep!  The 6 week scan on the trial was deemed to be stable within the range of 20% variance they use.   When I saw my results and made my own calculation I was actually just over 19% so very close to not being declared stable.  However, we continued for a further 6 weeks with the decline in my health becoming worse and more noticeable.  I have been experiencing low haemoglobin and had to have a second blood transfusion but even that didn’t help me.  At the next 6 week scan the growth was found to be more than 20% so, with great cheers I came off the trial drug.  Almost immediately I started to feel better and have gradually become much more normal now as it has worked its way out of my system.  That’s a trial that I hope other people are not experiencing in the same way I did!

I have been seeing the palliative care team for many months now as the pain had become uncontrolled and it was actually at a meeting with the palliative care doctor that I was told the scan results.  My normal doctor, Dr Clipsham, was not available so I was given an appointment to see Dr Bronnert – who was the first palliative care doctor I saw 3 years ago.  She was very good and listened to everything I said.  During the time on the trial I had experienced a few episodes of not being in full control of my bladder.  I had mentioned it to the oncology team and they said they had not had any other complaints of this nature. So I then mentioned it to Dr Bronnert on the basis that if it wasn’t the trial drug it must be one of the others.  We discussed how this had been and then she did some resistance tests on my legs to which she found less resistance in my left leg than my right.  This indicated the need for an urgent MRI scan of head neck and spine!  Panic (for me anyway) – I may have a tumour on my spine.  She put me on steroids immediately at 16mg a day – which in my experience was quite a lot, while we waited.  Fortunately the steroids didn’t kept me awake so much as I thought they might and they have improved my appetite a bit.  They also helped to control the pain!

When I saw Prof Fennell the following week he halved the steroid dose and put it on a reducing scale so that by the time we had the result of the scan I would almost be off them and clear to be in wash out for the new trial.  He seemed to think that there really wasn’t anything to worry about and so I was quite reassured.  I finally had the MRI scan on bank holiday Monday – one and a half hours in the scanner! and got the result when I saw Dr Bronnert on Wednesday.  She was right, there is indeed something on my spine although it is not sufficiently defined to be sure what.  As the MRi is the best scan you can get nothing else is going to tell them any more so now it is down to the MDT to discuss it and decide what they think and what should be done.  That should have been this Friday but won’t now be until next Friday as the consultants are all in conferences.  Hence my inability to give any definitive decisions on where we go from here.  The steroids have been held at 4mg until they make some decisions but otherwise it is sit and wait.  This means that they are not now controlling the pain and in fact they are also disturbing my sleep now as the other drugs have worked their way out of my system.

I did see a different pain specialist on Thursday.  He was talking about how to control the nerve pain which has been the bane of my life practically since the operation.  None of the pain killers I have had have really made a difference, except with the assistance of the steroids.  He did mention cordotomy but I felt that he didn’t think it was the right time to be thinking about that.  He has offered another drug, which I think wold be taken in addition to the current cocktail.  However he also talked about a more localised nerve block which would involve injecting steroids into the site of the pain.  As it is steroids and we don’t want to prejudice the trial we are waiting to see what the outcome of MDT is and to be able to ask Prof Fennell about it too.  If not then I guess it will be back to drug options.  I am also considering methadone as a means of pain relief and I am not sure whether that would also relieve the nerve pain.  More questions, more waiting.

Through all this we have had family visiting too.  My niece arrived last Saturday from Germany and we hosted her until Monday.  Monday was a big day as it was mother-in-law’s 85th birthday so we had my niece, her mum and stepdad, my daughter and her family around together and in units for most of the day.  We went out for lunch but after it was a return to our house for some while we went to the hospital.  It gave my daughter a good chance to catch up with her gran whom she hadn’t been able to see for some time.  When we got back from the hospital it was a full collection of the clan again for a while before everyone dispersed to their respective homes.

Jerry’s sister and her family are still here, they bring a caravan and park on a caravan park near Melton, and we have seen them a few times this week too.  My niece, who moved out to the caravan when it arrived, has flown home today but the others are here for most of next week too.  We are trying to make the most of time together where possible and yesterday spent some time in a couple of the local parks – Beacon Hill and Bradgate Park.

I feel as if I still live at one or other of the hospitals lately as I seem to be there every few days.  Fortunately the next one is not now until Wednesday.  I had blocked out time – to fit the Epizyme trial, to enable us to have a holiday.  However, with that trial ending and life being in limbo we have still been unable to book anything and now my blocked out time has already been half taken up and so any chance of any kind of break is looking very remote indeed.  The only thing that is sacrosanct is my week wth my grandsons in August.  I may not be able to do much but I can take them to the beach and let them play in the sea and sand if nothing else.  That is precious time for me.

I have also  managed to participate in another fashion show at Debenhams as a model.  It is quite fun really, although when we were setting it up I was about at my lowest and I worried that I may not be able to manage.   Fortunately by the time of the show I was off the trial and starting to feel normal again.

Finally finished

When I started writing this blog my new kitchen was almost finished but because I have taken days to write it has been finished today.  We haven’t used it yet as we are waiting overnight for the grouting to set completely before we walk on it. Over the weekend we could have started to fill some of the cupboards, used the hob and sink and filled the pantry.  The only thing we did was to use the sink!  The pantry needed some paint touching up and the grouting on the floor in there anyway and we want to take our time and make sure we put everything where it should be so that we don’t have to move stuff.  I am quite pleased with how it looks now and once we start using it I am sure it will be fantastic.  There will be a small amount of painting for the decorator to do when he comes though as the tiling isn’t all over as I originally planned, but I am very pleased with it.  The painter will start after Easter.  These photos were from before the kitchen was finished but should give you an idea of what it is like.

On Saturday morning I cut the lawn – in two stages, and now the garden looks a bit better.  I have done some weeding in the week and still have some to do but the lawn was urgent as no gardening will get done until I have got the kitchen put back together.  We have had some lovely  weather for several days now and it inspires you to get out there and do it.

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Today was the bowls club opening day.  We were very fortunate that the weather was quite good but very cold.  A lot better than last year!  I managed to bowl 12 ends, although I did find it necessary to sit between ends a few times.  Quite pleased with myself though.  I shall not be bowling as a full member for the time being at the moment, just a casual member so that I can go once a week to see how I get on.  If I can cope with it OK I will take the full membership but we will have to see how it goes.

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I have had some good days and some bad days lately – more bad than good I think.  When I have bad days I can take maximum pain relief and still not get anywhere.  When Prof Fennell rang me with my scan results on Wednesday he said that I need to go back to Dr Clipsham.  Fortunately I was able to get an appointment to see her on Friday and she has doubled three lots of medication.  Not surprisingly I am now feeling very tired.  I go to sleep for two hours most afternoons now.   I know I have been sleeping every afternoon but it is usually somewhere close to one or one and a half hours.  I still feel sleepy even after a good 2 hours.  The additional pain relief does seem to have brought the pain under control now which is good.  I can start to feel normal – at least when I am awake!  I am still unable to do much at a time – no more than about half an hour before I have to take a break.  I am still unable to wear a bra – except for a sports bra, as my ribs feel bruised all the time.  I am hoping that now the pain has been brought under control this will improve.  I was quite upset when the palliative care doctor started talking about a cordotomy.  I have always understood that this is for people who are expected to have less than two years to live and all the time I am on treatment I am not there!  I understand why – if we are struggling to control the pain medically there is a surgical option.  I need to do some serious investigation into that before I make any decisions on that for sure.  She also implied that I may need anti-depressants.  I haven’t been on top form lately, I have been a bit negative for a while but I don’t think I need anti-depressants!  I think getting my life back – about the end of April will make a huge difference!

In the meantime, my 65th birthday looms and I will be having a spa day with a couple of friends.  We have decided not to have any treatments as one friend has varicose veins and there are strict limits on what she can have and they need clearance from the oncologist for anything I want.  So we are going to just have a lovely day lounging around in jacuzzi, steam room, sauna or sofa and maybe take part in an aqua fit class or something if we feel energetic.

Feeling negative

What a difference a couple of weeks can make in the life of a meso patient!  I have been feeling very negative since I saw the oncologist about 10 days ago and today I am so low that I have spent at least 3 hours asleep.

The oncologist seems to think that the trial drug isn’t working for me, although I don’t get my scan for another 10 days, as I am in so much pain at the moment and it doesn’t seem to be getting any better.  He is preparing to take me off this trial once the results of the scan are known and find another trial for me.  I know that he is being realistic and making advance plans but it made me feel quite negative.  Then I saw the palliative care doctor about the pain again.  She changed my tablets to try and find something with a less sedative effect.  This is because although they are 12 hour slow release I don’t take them all the time because of their effects.  This time I promised that I would – because they think that will help to bring the pain under control better, regardless of how sleepy they made me feel.  She also talked about other options if this doesn’t work, one of which was the cordotomy.  Now I know this is a fantastic treatment for those it works for.  But I also know that it is only given to people with  a life expectancy of less than 2 years!  I am not ready to be told I have less than 2 years!  All the time there are trials out there, there may be one that will work for me.  I have to have that hope.  But that on top of the oncologist’s pessimism really brought me down.  I have managed, with the help of an army of wonderful friends, to improve that but it is still there in the background.  Particularly since  I am still in quite a lot of pain and taking immediate release tablets as well as the slow release ones.  I am also almost totally unable to wear any kind of bra or crop top most of the time.

In the last week I have also had a few days when I have felt very lethargic, very sleepy and look very pale.  All symptoms of the low haemoglobin.  I am doing my best to eat as much of the right sort of foods as I can but this isn’t going to be kept under control by diet – the cancer is stronger than that.  When I was last at clinic my haemoglobin was 95, so in a period of 4 weeks it had dropped by 10, from 114 straight after the blood transfusion.  I guess I need to ring the Hope Unit and get tested again so that they can arrange another blood transfusion ahead of the next trial test in 10 days.  I need to be above 90 for the trial although I guess if I am below that when they test as long as a transfusion brings it up they will be OK.

Other than this my life is rumbling on on an even keel at the moment.  No major works under way yet, although they are planned soon.  My kitchen refurbishment is due to start on 3 April so life will be upside down again.  That will be immediately followed by the painter coming to sort all the decorating out, but then we are finished.  Only the garden left to do and that doesn’t even require us to be in.

My 65th birthday will fall in the middle of all that and I have planned a spa day with a couple of my friends.  I was hoping for a holiday but that hasn’t been possible, limitations of trials, so I had to settle for the spa day – which I really love too!  Hopefully once all the work is done I will feel well enough to go on holiday – I certainly don’t at the moment.

The only other exciting event in my life recently has been to go to my grandson’s school Grandparents lunch.  I took his other grandma and we drove for 2 hours each way to be there but it is so lovely to be able to do that, to be involved in their lives.  I had to sleep before I could drive back though.  I seem to plan my life round sleeping these days!

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