Sarah’s Myeloma Blog

Hi,

Just a quick line to say Tom is now married (last Sat) and he and Jem have moved into their house. It’s been very tiring getting this far, but such a happy occasion! It went brilliantly well and I even managed a few dances! I intend to post some pics just as soon as I can work out how to do it!! Will update properly soon.

Hi everyone. So sorry that I haven’t done an update for so long. Various people have nagged me in Xmas letters so I thought I’d do a swift update and then write a little more in the next week or so. I am fine at the moment, and not due back to see the consultant until very early Feb. Also, I have just been told that my retirement to ill-health has been approved, which frankly I wasn’t expecting. It won’t be much, but will remove me from this strange limbo state and make me officially retired. I can move into the retired teachers’ section of the NUT!!

It is a bit sad in a way, but I will have to move on and make a new life for myself. I have been very active with my TU and political work, but can’t spend all my time in front of the computer and sending angry letters to the paper! So I must find other creative outlets which I do for my own pleasure (or so says my psychologist, and I think she’s right).

BTW, there was a very good article in the Guardian the other day by a guy who is a journalist, left-winger, my age and myeloma sufferer. I wish I could have written something as good. It’s about the constant use of war imagery in the fight against cancer and the need to empower patients: http://www.guardian.co.uk/commentisfree/2009/dec/29/war-fight-cancer-empowering-patient. Please read it if you have time.

There are lots of family issues to keep me occupied too, with Tom and Jem getting married in Feb, Bob’s Nan reaching 100 shortly and sadly, the illness of his dad (asbestosis).

I haven’t got time for more right now, but will try to write more soon. Keep well and have a good 2010!

Hi, I was amazed at how long it has been since I last wrote. Lots of stuff has happened since then, with my son starting the tedious and expensive business of buying a house and my daughter just getting ready to go to Uni. Also, a sudden decision to build a conservatory and repave front and back, with all the usual hassle of builders not arriving etc etc.

Health-wise not too bad, although my daughter’s boyfriend managed to give me and Bob a cold on his last visit, so am hoping that I can keep it at bay and it won’t result in antibiotics. Everything fine at my last consultant’s appointment. I did have to have a colonoscopy to remove the polyp they couldn’t do the first time. It was definitely a worse experience than last time, as my digestive system is much more touchy since the transplant and it really didn’t like the laxatives, which left me with bad acid reflux,  or the probing around. The sedatives didn’t really work anything like as well as before, so it was more painful, and left me sore for some days. However, the memory soon fades and they did get the polyp out this time and do a biopsy - it’s good that they are keeping an eye on things.

Still feeling stupidly feeble physically - I keep coming upon people with the same condition who are back to work or doing amazing things, which is depressing. However, transplants can hit people in different ways - I was warned that I might not get back to normal, so I need to adapt. I also had more chemo before the transplant than is usual, when they couldn’t harvest my cells the first time, which might explain my slow recovery. It does feel like what it might be to be old! However, I can’t complain, as many people have felt much worse for years and I can still get out and about and do lots of things.

Instead I am focusing on  being useful in other ways. There’s lots of union work to do, letters to the paper to write and things to organise, most of which I can accomplish from my computer and phone. I’ve also spent time in the garden and have ordered a rather optimistic number of things to plant! Also there’s a lot of family support work to do with so much going on. It certainly helps to be at home, where I can field calls and help with paperwork.

I’ve got my application for early retirement through ill health started, but looks like it could take ages. I think I’m not really missing work as such, but do miss the social contact and the actual teaching - keep thinking of ideas for lessons!!

Not much else in terms of news, so will sign off now. Hope you all had good holidays and work is going well. If you want to visit or email, you know where I am. Sarah

Hi folks, quite a few people have been trying to find out how I am from my now seriously out of date blog. Sorry!!

Well, I’m generally doing fine: still in remission and only having appointments about every 6 weeks. Would be longer but my immune levels are still trundling along at the low end of normal and I guess my recovery is still a bit slow, especially in terms of stamina.

Some medical details for the interested: I didn’t have polymyalgia. My muscle aching did improve a fair bit until recently when I went down with a mysterious bug/virus (not swine flu - but had to have millions of swabs etc just in case) and have gone backwards a bit. My nerve ending tests did reveal marked deterioration in sensation in my feet and legs since the tests a year ago - much as I thought. I have been trying Gabapentin which helps with the nerve ending pain (and is also used by epileptics btw). It’s strong and you have to build up the dose - in my case to 12 tablets a day. It really doped me up - I was sleeping solidly (first time for years) but feeling very, very groggy on waking. So I weaned myself off it, only to realise that actually it was helping with the leg and foot pain, perhaps more than I thought. So when I have finished with these nasty antibiotics, I might try to very slowly build back up to a dose I can tolerate.

I have continued with the clinical psychologist appointments which have been very helpful. I can see that I’m not only dealing with the cancer issue itself and my worries about how that has and will affect the family, but also am in a sort of mourning for my job now I am retiring. It’s quite upsetting sometimes, but I think has been very positive in exploring a whole range of issues.  I will say more on this when I’ve got more time in the future. I have been given a ‘mindfulness’ DVD which is also interesting in its approach. I do think it’s important not to constantly give out a message that cancer sufferers are all ‘brave’ etc - sometimes we are and sometimes we’re not and it’s important to acknowledge that life-threatening diseases have both physical and mental repercussions both of which should be treated/taken seriously.

What else - well I have done a fair amount of union stuff, even doing a few events (including one very short march!). I’ve pottered in the garden and we’ve been away to the Isle of Wight for a break and to scatter mum’s ashes at last. Currently I’m suffering the usual side effects from very strong antibiotics for my bug - I always get thrush and lose my appetite. I’ve also had a whole batch of childhood vaccinations (my immunity was wiped out by the transplant) and am due to have a booster dose of some of them tomorrow if I’m well enough - I have been warned I’ll feel worse this time round - oh joy!

Not much else to report that I can think of - I’m hopelessly foggy by this time in the evning. I will try to do some short updates a bit more frequently. Meanwhile, thanks very much for everyone who has sent messages/emails - I will get back to you all, but am just a bit slow at the mo as I’m tired. Have a lovely summer - try not to let the weather get you down!

Hi everyone. Just a little update. Had my checkup a week and a half ago - my regular blood tests were marginally improved, but I still feel they are a bit low! No light chains available, but they are testing to see if I have polymyalgia (condition usually of the elderly which makes your muscles etc ache). I have had some discussion about sleeping problems - I have been prescribed tamazepam by my GP, but a full tablet makes me so doped up! At the hospital they think they might help with the muscle aching, but I don’t want to feel sleepy all day. I may try half tablets on a more regular basis or just accept being awake! Beta blockers may be an alternative, but they do lower your blood pressure and mine is already quite low. I did think I was making progress with the Zantac for indigestion, but have not been so good recently - however, I have been a little more relaxed about my diet and I think therein may be the problem. But low fat no choc diets are so boring!!!!

Yesterday I had a really positive visit to the clinical psychologist. I have felt low on and off for some months, which can be a feature of coming off treatment and being in recovery, and associated worries  and being physically run down.  I rejected the idea to start with (I always felt I was strong enough to cope)  but Bob said why not go, when I complained about my moods later. Before I went I brainstormed (mark of a teacher!!) my feelings - what was bugging/worrying me. I also wrote down positives and possible solutions. That exercise in itself was good - I was surprised at the results! The lady I saw was lovely and I basically just yattered away for over an hour (how anyone can listen to people all day pouring out their thoughts is beyond me). I did get upset briefly at the end, but felt very positive afterwards and haven’t felt low at all today. Talking to someone objective is really helpful, as you don’t need to ‘dump’ on the family. Often people feel the need to keep up a ‘face’. I am having another session soon and maybe able to explore my feelings a bit further. I would recommend it to anyone who has had treatment and is feeling low - but there was a waiting list!

I have taken the decision to try to get retirement through ill health. It’s difficult to get, but if I can’t get it I will take early retirement. It is a shame but I can’t see me recovering fully enough to get back to teaching for ages, if ever and I want to stay in remission as long as possible. The school is starting off the process which could take 2 or 3 months. I’ve got a nerve ending test coming up which should help with evidence and I shall probably ring the unions for any advice on how to apply. It’s a very strange feeling to be doing all this, but I have to change my priorities. I also have quite a few projects and other activities to keep me busy. I will miss all my friends amongst the staff - I really miss the social contact at the moment. My daughter commented very perceptively that I had a need to feel useful - so true - it’s one of the things that bugs me!  But I think it is the right thing to do.

Anyway really tired now (didn’t get to sleep until 3 last night!), so will write again soon. Thanks again to everyone who is keeping in contact by whatever means - it is really helping.

Hi folks. Sorry it’s been quite a while. I haven’t really got a good excuse, although there’s not much to tell you. I’m not going to hospital for checks so often now. My light chains which are good indicators of remission are still fine. My regular blood tests were all disappointingly down last visit for no apparent reason but I’m told not to worry! My immune system seems to have come to a halt at a low level. Recovery seems very slow, although I’m obviously making some progress. Just impatient!! Am on more limited meds now - back on my Bonefos which strengthens bones (and gives me indigestion!). Also I take Zantac for indigestion and a mild diuretic as my feet and ankles keep puffing up - mind you they used to at school! So peeing constantly!

On the good side I can walk a bit further and have managed to potter quite a bit in the garden during the good weather. Bob and I managed a couple of nights away in a pub in a posh village near Rutland Water. We visited Barnsdale Gardens and I did quite a bit of walking, broken only by visits to the cafe! I was shattered on our return but it perked us both up.  My digestion is possibly a bit better - still have ups and downs and acid reflux is a constant, but I have changed medication and it may be starting to work at least a bit. I’m not as low in mood, although I still have off days/hours and can get very irritable! I basically no longer look at the internet or anything which might remind me of my illness, so I can ‘live for the day’. If it comes back, then I might get interested again.

I am still plagued by aching and very weak muscles - getting up and down is a struggle and I get amazingly stiff, especially early morning. My numb feet don’t improve and are prickly. I have other minor problems like dry skin, spots in bad places and sore fingers. My sleeping patterns are very variable and I am definitely stupid - chemo brain is real! The Guardian had a good article on it the other day and it should go away eventually. Meanwhile I struggle with quick crosswords and Countdown, much to my family’s amusement. I’m also doing lots of union work by email and phone which I enjoy. Today I went out for the first time to a union event I helped to organise - Workers Memorial Day commemorating workers who have died or been injured or contracted diseases through work. I am shattered this evening but enjoyed going out to meet old friends and comrades in arms!!

Have had quite a few visitors recently which I really enjoy and also much correspondence. Many thanks to all concerned - it really helps. I am hoping that in a month or so I can return to driving so I can get out a bit, even if it is just to the library or hospital. But I think my concentration and co-ordination are still rather poor at present. Also I have no car - Tom took it over and then sold it!

Have just looked at my last blogs and realise that really I have progressed quite well compared to then. I guess that I don’t notice it on a day to day basis.

Anyway, I will try to write again soon - need my bed now! Love to everyone and remember to make time for yourselves, especially in this nice weather.

Didn’t realise how long it was since I last wrote. Just a quick entry as I’m off to bed shortly. I have a cold at the mo and went into hospital today to get my chest checked as I am coughing- but all seemed OK. Am hoping I can get over it without the dreaded antibiotics. Having appointments every two weeks at the moment. My recovery is going a bit slowly, with the various routine blood counts still on the low side and very variable. No real explanation - possibly as I had such a hefty lot of chemo before my second stem cell gathering - I didn’t feel fully recovered before I had the transplant.

The aching has been very bad - don’t know whether it’s the medication or over exertion. Today I took a paracetemol for the first time, which helped - and have been taking it very easy over the weekend. Felt very low for a couple of days, but a bit more cheerful today, despite the cold!  Bob took me to the library yesterday for the first time, and I have already nearly got through 3 books in a day and a half! (Read at night too when I can’t sleep).

Well, will update again when I feel a bit better. Thanks for the various messages - much appreciated.

Just to let you know that my bone marrow results were also very  good - they were struggling to find a plasma cell. My consultant is going to discuss my case at one of the meetings she goes to with people from Leicester and Kettering, to see whether we should be considering any other treatment, maintenance therapy or just  go for a ‘wait and see’ policy. There is a new mini type of transplant with a non-related donor being trialled elsewhere at the mo, as a reinforcement type of treatment, but it has various pros and cons - I will wait and see what she says. Difficult to think about more treatment at the mo. You will be pleased to know that she used my case in a recent lecture she gave - fame at last!

I’m trying to be more active, and have started doing regular short  walks and some stretching exercises to strengthen my muscles, which are weedy to say the least. Did prune my buddleia today, but am exhausted now! I am still finding it hard to shake off the tiredness and  the indigestion. I think the latter will improve when I finish some of the tablets - another month of Acyclovir and folic acid, just a few more days of magnesium and a couple of weeks of an anti-fungal drug which I’ve just been prescribed - my mouth and tongue have been a bit sore. All of these drugs can impact on the digestion. Unfortunately I do need to start taking my Bonefos again (maintenance drug which strengthens bones) and they are also indigestible! I will gradually reintroduce them when I come off the magnesium.  I’m getting a referral to a nutritionist as well so that might help me to sort out my diet. Did my last inhalation of the chest antibiotic, so that’s good!

Nothing much else to report, so will update when I next have news.

Had my endoscopy this morning. Even though I’d had one before I was still nervous. I have a strong gag reflex. They had to give me a small mouthpiece (to guide the tube and stop you biting it) as the big one was impossible for me to take. You have a spray on the back of your throat and I had sedation (not everyone wants or needs it). Although you are semi-awake for the procedure, most people really do forget about most of it afterwards - I think I am forgetting more as time goes on! The whole thing only lasts about 5 minutes and really isn’t too bad. There are good website animations of the process which I will put in as links on the Bupa site and the NHS site.

My stomach is fine but they discovered I had a small hiatus hernia (also explained on the websites  - Bupa has excellent animation) which is letting acid up into the oesophagus. I think it just means I will have to keep taking the medication - was given two leaflets, but they didn’t tell me anything I don’t know already. They don’t normally do surgery unless the hernias get worse. However, nothing seems to explain the twinges! I have to say they are getting better slowly.I think I may have to wait until I stop taking the medication, which I suspect makes things much worse.

Anyway, pleased I have nothing serious. Now tired and have a sore throat - and heartburn as well as wind (they pump air in your tummy)!! Will write again next week if I get bone marrow results.