Sarah’s Myeloma Blog

Still sore after the Hickman line was put in. I had it cleaned up yesterday and very gungy it was too! Then I noticed it had bled again late yesterday and it is still oozing a bit today, so am leaving it strictly alone - hopefully it will develop a scab. I think the blood thinning stuff probably isn’t helping. However, it flushed through well. Today I noticed bruising on my shoulder too. I have just used tape from the hospital to keep the line up this time, in the hope it won’t cause a skin rash - so far so good.

I also had a lung function test yesterday which was interesting. You have to put a plastic (disposable) mouthpiece in between your lips and gums and bite down on little plastic bits. A bit like diving equipment stuff I guess. I’ve got a small mouth and get a bit ‘retchy’ easily, but managed it OK. It’s attached to a tube, oxygen cylinders and the inevitable computer - I could watch my results appear in graphical form. You have a nose clip on for the tests, but can take everything out in between each one. There must have been at least 6 or 7 tests. You breathe normally and then have to do things like breathe right out - squeezing out every bit of air and then breathing in and expanding your lungs, sometimes fast and sometimes slowly. I also had to hold my breath for 8 seconds a couple of times. In one test you just breathe normally for 2 minutes. Apart from my ears popping a bit when I tried to swallow it was all easy - it is just important to stay relaxed, especially just after the nose clip goes on!

Anyway I apparently have 120% lung function for someone of my age and gender - ie 20% better than average! So I was very chuffed!

On Sunday morning I start the 24 hour urine collection and then have to take it in Monday am and have another blood test to go with it. I’m not sure how I’ll get in as Tom starts his new job! He has been a brilliant taxi for me.

All being well I go into hospital on Wednesday. I will start on a fluid drip. On Thurs I get the high dose chemo with  (I think) a small dose of steroids. On Friday I get my stem cells back in - they will be defrosted a bit at a time in front of me. The preservative they keep them in can cause allergic reactions, so I get piriton beforehand. Apparently I will start to breathe out the preservative which smells and tastes of sweetcorn!

Once all that is done, they keep an eye on me and if I am OK I can go home for the weekend. Then back in on Monday to my own ensuite room. After a few days my immune system will drop right down and I will quite probably get an infection, so will be put on antibiotics. I will probably have transfusions too. Other key side effects are bad diarrhoea and an ulcerated and inflamed mouth and throat. During this time I will stay in my room and will feel quite poorly. Then hopefully a couple of weeks after day 1 of the stem cells being returned to me, they will start to regrow my immune system and I will begin to feel better. The earliest I can be released from hospital is three to four weeks after the transplant: I have to be back on my feet, eating and infection free.

Then I will have to go in for check ups 2 to 3 times a week. There is a danger of shingles apparently and as my immune system has been destroyed I may catch any bugs going around - apparently I will need to be revaccinated eventually against those old childhood diseases!

It will take quite a few months to recover and I will feel very tired. I mean to try regular exercise to rebuild wasted muscles. Apparently relaxation exercises can help - if anyone has good audio CDs to recommend I’d be grateful. New research seems to suggest exercise, relaxation and a good diet can increase cancer survival rates considerably - although you wonder whether just being monitored for research makes a difference!

So - feeling a bit nervous, but really glad to be actually getting there now. I am looking forward though to the time when I can go out and do things again. I do feel very restless sometimes and really feel like going away or out to events. I know I just have to dig in for a long haul though and be patient. Who would have guessed that it would all take this long? I thought I’d have had the transplant in the summer! But I am nearly there now.

I will probably restrict visitors to family while I am in, just to keep safe, but Bob will bring in messages if people want to email. It’s lovely to hear from people - any old gossip will do! Still after book recommendations too, although I now have quite a pile and the family got me books for my birthday, including Little Dorrit from Jemma (Tom’s girlfriend), which is great - nice and thick!

I’ll do another post before I go in next week and hopefully one next weekend if I get home for a couple of days. So speak to you all soon.

Short post as I had a new Hickman line in today and feeling very sore around shoulder and chest (now on right side). Bit more uncomfortable during insertion this time, as it sounded slightly more difficult to get in. Was in the new cardiac centre at the hospital - very smart and clean. They will be able to do more minor cardiac procedures by spring, instead of patients having to go to Oxford. As always all the staff from assistants to the consultant were lovely. As were the other patients who I talked to, all of whom were having a worse time than me! However, the egg sandwich was awful - eggs cooked into rubber slices!!!

Have had lots of tests this week: echocardiogram (saw and heard my heart beating and the valves opening and shutting which was weird!), chest x-ray, blood and swab tests. Tomorrow I have my line checked and a lung function test and Sun to Mon I have to do the dreaded urine collection for 24 hours. Then hopefully into hospital to start treatment on Wed.

Now really can’t write more, so will update further another day - also will put up link to good website in USA with videos on post cancer stuff.

Had a strange afternoon in hospital yesterday. Started very well - told by my consultant that my bad cells have come down considerably, probably due to the ESHAPS chemo, so the transplant can go ahead. We did the consent form and she took me through the procedure, including all the nasty side effects (!).

Then she needed to give me a check up and that’s when she noticed some of my neck veins on my Hickman line side were a bit prominent. I was sent up for an ultrasound and I knew immediately he started pressing hard with the scanner that they were tender and there was a problem. In fact I do have some clots in my neck vein, so when I went back to haematology I was told that they would pull out (I think rip was the word used!) my line. I was a bit staggered that it was that easy - but low and behold I lay on the bed and with a few tugs and an ouch moment or two it was out! Had to lie flat for a while - well I wasn’t about to jump around anyway! I will try to write a short page on that for other people interested in the detail at some stage. Now I have to inject myself every day with blood thinning stuff, which I started last night. I’m just pleased that Angela noticed it, as I hadn’t and there didn’t seem to be any other problem. Also, that they caught it early!

I have to say it’s a bit unnerving to be told you’ve got clots, and I’m a bit anxious from time to time, but nobody seemed to think I should  worry about it too much - I just have to watch for swelling in my neck, face or arm.

Also, the transplant can still go ahead. I will have a new line put in either end of next week or beginning of the week after, when I have the transplant. I also have lots more tests next week to check I’m fit - eg lungs, bloods, maybe another of the dreaded 24 hour urine collections….

Today I’m really tired - still not sleeping very well at all and often getting up and reading. I get crawly feelings in my arms and my feet prickle. I think yesterday was quite stressful too! But I am taking it easy and hopefully should feel better in the next day or so. Also, I can enjoy not having a line for a few days. They will only have one in for a few weeks during the transplant.

Too tired to write any more, but will keep you all posted.

Can anyone recommend some books for me to read while I’m in hospital? I am a voracious reader (my parents were librarians), but I think as I won’t be very well and my brain is already very fuzzy, I need easy stuff that I can pick up and put down, with no complicated plots. What I’m after are comic novels, diaries, travel writing or diary compilations and possibly lightish biographies. I do like foreign novels. Problem is I have read an awful lots of this sort of thing from Bryson to Garrison Keillor, Carl Hiassen, Stephen Fry, the diaries of Pepys and Tony Benn etc. But any ideas would be very gratefully received not just by me, but by Bob, who is looking to buy some stuff for me for birthday and Xmas!

Otherwise just getting along - still not sleeping well, and feeling tired and a bit apathetic in the mornings, but tending to be brighter later. Got out in the garden for a while today and just pottered around doing some deadheading and clearing old pots etc.

Did manage to flush my Hickman line with no problems yesterday - very pleased with myself. I set up everything beforehand and tried to be very logical about it. One important thing is to remember which line you do first. Mine are red and white where the bungs go in so I remember red, white and blue as a mnenomic and do red first.

Anyway, can’t complain about how things are going, and despite continuing indigestion I am eating well, my weight is stable and my bowels are regular! What more could I ask for!!?

Thought I’d write a quick update, though not much to report. On Monday I had a flu jab and another bone marrow test - still a bit sore from both and rather achy from the jab. I also had an ECG - I did have to have one anyway before the transplant, but I was fretting a bit about feeling my heart thump a bit. My consultant had a good listen and said I had a quiet heart (!) and it seemed OK - this was confirmed by a normal ECG reading.

They won’t make a final decision about the transplant until the results come though - but time is ticking on now! I feel that there’s lots to do at home to prepare for Xmas, but I haven’t the energy to do it. I’m particularly irritated by very bad acid reflux which is really uncomfortable. We’ve propped the bed up a bit but I still have a couple of pillows and this has made my neck and shoulders ache too. It tends to make me feel a bit dismal sometimes. I had this problem last year before I got ill and it can take ages to shift - this time I’m likely to have worse problems as chemo can cause throat problems too. surprising how a small problem can affect quality of life. I think I will ask for something stronger to deal with the problem next week. I also wake in the night with ‘crawly’ feelings in my legs and arms. Sometimes I get up and read until it goes.

Bob and I flushed my Hickman line last week and I will do so again today. Made a complete hash of it - couldn’t work out how to get the saline into the syringe - I was doing it wrong. Dripped it everywhere and had to start again. Also Bob cut himself snapping the head off the ampoule the wrong way! However, got Heidi to show me again at the hospital and hope I can do it better this time! I would never make a nurse!! I still find the line a nuisance - there has to be a better way to keep in hooked up. I am slightly allergic to the plasters things they give you to keep it in place, so have to move them around. I think the problem is partly to do with having it coming out between your boobs - I believe men have it emerging higher up.

Am enjoying having a shower now. Also, I was expecting my hair to fall out again, but although my scalp is tender, nothing has happened yet and in fact my hair has grown - it’s short and curly - white at the sides and sort of a mixture of white and black on top. I don’t use a headscarf anymore as it is irritating - just put on a woolly hat outdoors to keep warm.

Anyway, will update next week after I get my results on Wed - hopefully. Many thanks to all the kind people who have visited and emailed as it really helps to keep me cheerful!

Feel more cheerful since the last post, although still physically weak. Had hospital visit on Tuesday, which was OK apart from being a bit lengthy in terms of waiting and also my Hickman line refusing to give blood for a while, which it does sometimes. Stuff goes in OK, but it has been explained to me that if there’s even a small kink pushing stuff in it is OK as it straightens it out, but sucking stuff out makes it worse! But Liz eventually lay me down and it came out perfectly - so tip there for others! My consultant said my haemoglobin and white cell count were still a bit low, but not hugely and it wasn’t really surprising I was still a bit shaky. She feels the increased prickles in my feet may be a good sign. I am still provisionally looking at the first week in Dec for the transplant, but still tests etc to have. Next Monday I’m having another bone marrow test (and flu jab in morning so not a good day for needles!). This will show if my bad plasma cells are still low enough to do the transplant. Hope so after all that chemo!!

Also, I don’t have to have a dressing on my line anymore! I am able to shower now so long as I put a temporary dressing on - so had a lovely shower today which really made me feel better. Going to try flushing my line on Friday - bit nervous, but need to learn, otherwise I’ll have to go up to the hospital for the second flush of the week.

My hair has grown a bit (curly and generally white) but it may start shedding again soon from the chemo. A recent article said that many women get white and curly hair after chemo, but it does usually eventually revert back to orginal state and colour. I will lose it all after the transplant anyway. I’m pretty used to it now and don’t bother about covering it up except when it is cold outside! I hate hats and headscarves - they hurt my ears.

Have had several visitors and that has been really good and really helps. My two visitors today (one planned, one unexpected) both have their own serious health problems too - it’s good to share experiences, but also to talk about normal things and catch up on gossip etc.

So, pottering along and taking it easy. Hopefully by next week I shall feel a bit more active. Hope you are all having a good week and maybe enjoyed some fireworks!

This week I have struggled a bit with feeling low. In the past I have had some ups and downs, not surprisingly, but have generally remained positive. But since my last chemo, it has been more of an effort, and despite the success of the stem cell collection, it’s been harder to be upbeat.

Thinking about it logically, it’s not surprising. It’s already been a long haul, longer perhaps than anticipated, in that I thought I would have had my transplant by now and be in recovery. Now the transplant is looming, I know that it will be really hard work and I will feel very poorly. I have had a lot of damaging drugs and procedures already inflicted on my body. Physically I still suffer from the aftermaths of my treatments. I am generally quite tired and weak, the CTD cycles have left me with numb and prickly feet and fingers as well as continued shakiness, especially in my knees. I find it very tiring to walk or stand for too long. I am starting to get on top of my indigestion, but it’s still an issue that restricts my diet and being propped up in bed gives me back ache. I have piles! The Hickman line is OK, but the clear dressings are now causing an itchy rash, so I will have to ask about that at my appointment next week. I think that subconsciously, having one in can be a bit worrying, in that you know that infections are possible. I guess that I have been so used to activity, I resent having to slow down and then I overdo things. And then, as all cancer patients know, there are moments of fear….which is why most of us live for each day as it comes.

I think that also I feel down as I have quite a few bits of house related paperwork to do, as well as a huge desire to tidy the study with all my school stuff scattered about and my mum’s stuff too. The house is a tip and everyone else  is very busy and I have to say, doesn’t really notice! I’ve never been very tidy myself, but it does look at real mess at the mo. I also want to sort out some bits in the garden and the Xmas shopping. Yet days go past and I haven’t the energy yet.

So what strategies can I use to help myself?

On the positive side, I have a few weeks of recovery before the transplant. My appetite is good and my bowels are fine (sorry to be so explicit, but these things are important!). I generally sleep well - better than before when I was on drugs and despite being propped up. I usually cheer up by the afternoon and evening.

I have started to do some bits and pieces and next week I hope to make more progress. Visitors have cheered me up a lot - I love the gossip! I have time to read which I love (finished War and Peace BTW!).

I think there are things that I can do to buck myself up: set small goals, have little walks, go out in the garden, talk to people, do my back exercises and take things a day at a time. Recognise that I am entitled to feel a bit down sometimes and that recovery can take quite a time. Remember that despite it all, I have made progress and will hopefully continue to do so. It has been very good to get my life in perspective - for years I had hardly ever slowed down. I have time to talk to the family more!! And they are really supportive. Bob and I are thinking of holidays we could have. It is good to plan treats in the future. I also enjoy still being able to have an input to union/political work, even if it’s all computer/email stuff. It’s important not to lose touch with activities you enjoy.

I’m no hero. I’m not going to be cycling across America etc. Most cancer patients (and people suffering from any long term treatment really) experience these lows and by and large we fight through them and cope in more mundane ways.  We do often hide what we feel so as not to worry others, but maybe it’s good to sometimes express what we feel. I’ve chosen to say something online because I think anyone else with similar problems can feel they aren’t the only one. But there are McMillan nurses who can do counselling too and often friends and family can be really helpful. Bottling things up isn’t always best. My father never spoke of his cancer and I think that was a problem for all of us, so I have tried to be more open about mine. As I have said before, most cancer patients are out there in the community getting on with our lives, dealing with the fear and the problems as best they can. People are often described as being courageous, but actually it’s born of necessity - the need to just get on with life with all it’s trivial and day to day concerns.

I hope this post has not been depressing to those reading it, as it’s not meant to be. It’s tempting for me to portray myself as someone with an unremittingly positive attitude, but that wouldn’t be truthful and can’t be useful to anyone else who has cancer, who reads the blog. So no apologies for a more introspective post!