Sarah’s Myeloma Blog

Just to say that for those wanting to know more about the second stem cell collection, I will be doing a separate page, as I know not everyone will be interested in the specific details. So see menu on right.

I am taking it easy today, as yesterday I probably did a bit much (although that’s not saying a lot). I think when you get home it’s tempting to think that you can start doing all sorts of jobs, forgetting that up till now you’ve been lying around and that the whole experience of chemo and stem cell collection takes it out of you.

Washing myself is still tricky as I can’t get the place where the Hickman line emerges wet yet, and the line dangles down quite low if I don’t loop it up in my bra!! I compromise with sitting in a low bath and using a flannel for the top half, but I will be glad to get back to showers! However, hair washing is great - a quick sloosh with some water and the occasional shampoo or gel and it’s dry in a minute! My hair is growing back, but the latest chemo will no doubt mean it will all shed again in the next week or so. It looks whiter than before, so maybe eventually I’ll look very distinguished but older! I may well lose nearly all body hair after the transplant chemo. Well, it will save on shaving time!

I am getting through War and Peace at quite a rate now (past the 1000 page mark- but of course I do have the time!) and on the home run! Some of Tolstoy’s diversionary musings are very interesting (if you skip the stuff on Freemasonry) and he has lots to say on the causes of events, which I would really recommend to historians, even if you don’t want to read the rest! More on this another time, but I would think that some quotes from these sections would be excellent as a stimulus for discussion with students and might try it sometime. I have also enjoyed the battles much more than I anticipated - they really do show the chaotic nature of such events so well.

Anyway, that’s enough for now! More musings later when I have the energy.

Very quick note as very tired - will update more fully in the next day or so. But I now have enough stem cells for my transplant! And believe me, this morning, I didn’t think that would happen. So quite a business, but more later. Suffice to say, I will go to bed happier tonight! And many, many thanks to Chris and Paul who looked after me for the second time and fed me lovely food and also to all in Leicester Haematology Day Care (and the lab!) who looked after me so well and so cheerfully.

Very shortly I’m off to Leics - starting stem cell collection on Tuesday. I won’t be taking the computer, so will report back whenever I get home. Keep your collective fingers crossed for me that this time it will work!!!!

Having a lazy day. Slept very badly (v. bad indigestion partly to blame) - have started reading War and Peace (you laid down the challenge Chris!) but really struggling with the Russian names! Find it hard to catch up sleep in the day. However, feeling marginally more human today. Trying to eat small frequent snacks of things to soak up my stomach acid. Alternating pottering around slowly (VERY slowly) with lying on bed. May sit in garden for a short time if not too cold. Flea bite still there and painful - may take some time for antibiotics to deal with it - just so long as it doesn’t get worse. I don’t know - you spend all your money and affection on these cats and how do they repay you - with fleas and dead mice.

Teachers out there - you MUST read Mike Kent and Stephen Jones (latter in FE section) in TES - the voices of sanity in education. Oddly had stopped listening to Radio 4, which was a mainstay for me, but did so today from You and Yours (oh dear, so unfocused) to the end of the Archers. It’s like I’d never been away.

OK, now I’m really going to go and put some washing on! Apologies for the low level of this post, but that’s how my brain is!

Well, despite managing OK at hospital, I have to say post-chemo/off steroids is yuck (I would use a stronger word!). Both physically and mentally it has been challenging - didn’t realise how weak I would be. Not helped by a mysterious red tender lump forming on the back of my thigh on Wed night, immediately making me think ‘thrombosis’. After spoiling Bob’s evening with a dash to the hospital (he was due at a conference - he did make it eventually), I was assured that if nothing else it wasn’t that. Much puzzlement, but when I went in today my wonderful nurse Chris thought it looked more like a flea bite, and after some prodding the consultant and doctor did agree it was probably a skin infection of some sort. So, more large indigestion causing antibiotics for 7 days - as if the acid in my stomach wasn’t enough already. Actually I can put up with feeling tired and weak, but indigestion and a terrible taste in my mouth bug me much more. Having now had to go to the hospital three times in three days and having had what seems like gallons of blood removed I’m hoping for a quiet day of recovery tomorrow. Also had problems Tues and Wed - couldn’t get blood out of the Hickman line - but today it flowed again under Chris’s experienced hands! Now injecting twice a day, so bones starting to ache, but all in a good cause - just get those stem cells growing!! Too tired to write more, so maybe catch up in day or two.

Definitely a ‘day at a time’ period now. Home after longer in hospital than expected. Having thought it was Mon to Fri it was realised that I needed 24 hour fluids both before and after the treatment as well as during, so I only got out of hospital yesterday.

Can certainly say I have felt better - but to be expected after the hefty dosages of chemo, fluids and steroids, let alone the supporting medication. I think quite a bit of bed rest is the order of the day, so a short post.

I was originally hoping for my own room on the ward, but was in a side ward of 4 and can honestly say I had one of the most amazing experiences of my life in there. I have been privileged to spend time with 4 ‘ordinary’ women whose life experiences were anything but, and whose bravery and courage would take a lot of beating. If I can face the future with anything like their attitude I will consider myself doing well. So thank you to Winnie, Teena, Pauline and Sallie. There was an apt quote from an article in the Guardian on Alice Munro from her book ‘Girls and Women at Home’ (1971): ‘People’s lives were….dull, simple, amazing and unfathomable - deep caves paved with kitchen linoleum.’ And doesn’t that just sum it up.

And while we’re at it, thanks to the staff at the hospital who were unfailingly friendly and helpful and who don’t deserve the shocking pressure put on them by chronic understaffing. Dreadful staffing levels, especially at night. Young and sometimes quite inexperienced ‘bank’ staff (health assistants) doing 12 hour shifts. Occasions when there only appeared to be one experienced member of staff on in a team. Patients having to wait for buzzers to be answered (eg for commodes), not through the fault of staff, who were tearing around. Staff trying to do the drug trolley and observations (blood pressure, temp, pulse) at the same time, as well as dealing with patient demands (and you can’t leave a drug trolley open).

As far as my own regime went - I will put up a page later on ESHAPS for info. Suffice to say - two drips constantly, three lots of chemo, steroids, 24 hour fluids plus diurectics. Measuring all urine out and all liquid in - so nice to go to the loo without doing this! But it wasn’t as bad as I expected and I wasn’t sick - only nauseous sometimes and ate OK. Feel much worse now, but this will pass.

Treatment now all put back a day, so start two injections a day of growth factor from tomorrow, which will not be great, but will hopefully work. Then new attempt at collection from the Tues after in Leics. So fingers crossed.

Meanwhile, I’m back to bed….

I’m too tired to do a long post at the mo or to deal with all Gregory’s points. Here are some general comments.

Capitalism makes profit by exploiting workers and appropriating the surplus value they create. The basic way this works is well explained by Marx (and capitalism knows and even admits that he was right) in Das Kapital, but perhaps more easily in Wages Price and Profit and Wage Labour and Capital. As capitalism is based on competition there are always losers. When companies go bust, workers are unemployed.

Capital and Labour are constantly in conflict as capitalism constantly seeks to maximise profits by depressing wages and conditions. If workers hadn’t fought this over the years and built unions we would still be living with the appalling conditions of the early Industrial Revolution. Capitalism and the governments it controls never give away anything to workers, unless workers fight for it. Since Thatcher, workers have fought less and are now losing their hard won gains in health, education and social welfare. Capitalism is fighting to privatise and seize the assets it lost after the war.

The logic of not fighting is to return to the old conditions - and in fact in many parts of the world (including the west) workers are working long hours, with little pay, no pensions and appalling conditions of service. As workers in different countries get stronger and fight to improve, capital moves on to a less well organised country. You might read Naomi Klein’s ‘Shock Doctrine’ to see how western capitalism has sought to control the economies of whole countries.

Why are workers supposed to sacrifice their wages and conditions of service, when the catastrophes of capitalism are not their fault? Workers are frightened by this ‘don’t rock the boast - this is the only system that works’ attitude. The papers are full of ‘we must turn back to a more humane, regulated capitalism’ rubbish. Capitalism was only restrained by fear of labour and is unlikely now, when labour is weak to voluntarily go back to that. Will Gordon Brown introduce strong regulation? Will he stop privatising? Boost manufacturing industry? Unlikely. The tax payer will bear the brunt of all this in cuts.

Small businesses and teachers and nurses making money in their spare time won’t save our economy. I have a passion and an expertise for teaching. During my holidays (which I deserve) I also spend hours on preparation. Of course we share our ideas. Why do we accept the lie that we feel we should be given everything on a plate? British workers work some of the longest hours in Europe and do the most overtime. Frankly, a lot of us are knackered!! Why should my nurses at hospital, who are run off their feet, not use their leisure time to enjoy relaxing pastimes? And the poor students - my experience is they work like mad - harder than I did to get to uni and then face years of debt.

Capitalism feeds us all sort of lies - encourages divisiveness - why should they have better pensions, wages etc? These people are lazy, those are greedy etc. Instead we need to return to collectivism and community. How could we better run our industries and workplaces? We could do it without them!

That’s all for now folks - too tired to even type. Need to finish packing for hospital now. Back in a few days probably.

Had check up on my line yesterday and everything was fine - line has to be flushed through, which makes you chest feel momentarily cold! But nice not to have a needle stuck in your arm for the blood collection. Poor staff (doctors, nurses and receptionists) all working madly - very very busy and one consultant just retired and not yet replaced so some doubling up of casework. All heroes! My consultant had also popped in with little daughter in tow, on her day off - just to sort a few things out!

Given a special sort of plaster thing which you can use to loop up the lines and stick where you want them, out of the way on your stomach, which is useful. Still very sore - told that could last a week or two. Also, I have indigestion at the mo, making things worse. But as always there are people at the clinic having a much worse time, so can’t grumble.

Very tired as only getting a few hours sleep every night, so in bed this morning, reading papers and dozing! Feel I deserve a slack day - yesterday walked into town from hospital, did little bit of shopping, helped son later with interview technique, sorted most of Tesco order (but delivery man brilliant at bringing stuff in and unloading heavy bits), made nice veg stew as husband broke down and was late. Probably overdid it.

Bit concerned about numb and prickly feet (caused by thalidomide) which actually seem worse and also some numbness in hands and fingers, which seems new, so will ask for another nerve ending test. Tips of fingers also still red and dry.

All for now. Awaiting tumble dryer repair man and need to do Trades Council minutes and Agenda!

I had a Hickman Line put in yesterday, which was quite interesting. This involved going into theatre, being given mild sedation, having my face covered up (presumably so I couldn’t watch!), a lot of pushing and pulling for a while and then a period of recovery (was wheeled back to haematology where they had difficulty getting round all the corners!). I now have two tubes dangling from between my boobs right down my front. How I will wear a bra I don’t know. There should be something invented to hold them steady (no, not my boobs!) - I’m worried about pulling them out. I’m not allowed to lift or bend over - good excuse to get the family to unload the Tesco online shop tomorrow!

Once the local anaesthetic and painkillers wore off I felt like someone had been pummelling my arm and shoulder, and my chest is sore. That and lack of sleep has made me tired today. Tomorrow I go back to have it checked out. I am also doing a 24 hour urine collection - it is such a pain and I have put notices around to remind myself, as you can’t miss one - I did that earlier and you have to start all over again.

As I didn’t know much about lines beforehand, and there’s not much on the net, I thought I might do a more detailed account on a page for those who are interested, with some links. Maybe in the next few days. In the meantime BUPA has a great little animated clip showing how it’s done. I will put a link in. Will be in hospital Mon to Fri next week having 3 different types of chemo - will be wired up to drips all the time. Also will have steroids, fluids and anti-sickness stuff. I also have to have anti-gout medicine too (side effect prevention!!). Then the next week, back to the injections and the week after, to Leics for the second attempt at stem cell collection. Hopefully! My consultant wants my transplant before Xmas to take advantage of the this next lot of chemo, but there are others in the queue and the ward can only cope with one every couple of weeks. So we shall see. And of course it assumes I don’t get infections etc. So, fingers crossed - or would do if I was superstitious! Will try to do another post or two before I go into hospital - not sure if they will have internet connections for patients!

Apologies for a lack of posts - I had to have a Hickman line for next week’s chemo put in my chest yesterday and feel like I’ve been kicked about today and very tired. The debate on capitalism will continue, but not today! I am of course a socialist, so rather than believe we have to sacrifice ourselves to profit (eg see attempt at US bail out to those who caused the problem) we should get rid of capitalism altogether - it’s a system based on competition in which there will always be losers - normally the workers. I will expand on this when I can - another hospital appointment tomorrow though!