Long time no write…

The days go by and turn into weeks and somehow I’ve not been motivated to write. It’s been hard to gather my thoughts and know what I want to say. Even harder to stay focused on one set of thoughts at a time; thus the lack of blog writing.

A low level depression descended on me following my stay in hospital; some days milder, some quite full on – very up and down. I am slowly coming round to feeling more ‘perky’ (my mum’s word), but it has felt like quite a bumpy ride.

I have been unable to get my head round how I am feeling and/or why. One of the difficulties is that, as well as recovering from the high dose chemotherapy, I am also dealing with menopausal symptoms and often don’t know which of these is the cause of how I’m feeling.

The hardest question to answer at the moment is “How are you?” For me, it may as well be an algebraic equation… Firstly, does the person asking really want to know, or are they just using a habitual greeting? If it’s the latter, I tend to say “I’m getting better”, which is honest and suitably vague to not disturb the person asking. For some weeks, I had to believe this to be the case, but it felt so-o-o-o slow. It was less about the physical aspects, although that played a part too, but more my mental/psychological state.

If it’s someone who genuinely wants to know, I go through all the physical and mental changes that have happened or are happening to me, depending on what’s uppermost for me on that particular day…

And for those somewhere in between, it’s the hardest as I don’t quite know which bits to give them and which to leave out, so I may come across as a babbling fool or a tad abrupt. It’s such a loaded question and the poor questioner doesn’t even realise.

So here’s a quick update for those of you who have not asked but may still be interested…

The severe mucositis I had has gone, although I occasionally get a sense of my tongue and teeth being too close to each other. However, I can now taste food, want to eat interesting food and have even been cooking and enjoying going to restaurants.

My mouth, nose and skin are still drier than ‘normal’, but I’m less aware of it on a day-to-day basis. I was reading aloud to a friend the other day and found I had to keep sipping water as my mouth kept getting very dry while I read.

The diarrhoeia has pretty much stopped, although I do have an occasional run to the toilet. Otherwise it’s almost back to normal.

I lost a lot of weight from being in hospital and since, but I have managed to put on 1kg in the last couple of weeks, so I hope it will continue in that direction. I need to get a bit bigger to fill even my new size 8 clothes, never mind the 10’s, 12’s, 14’s and 16’s which previous versions of myself used to wear.

Blog followers and friends I’ve seen since July will know that I lost/shaved my head hair and was completely bald for a while. My head hair is starting to grow back, so I now have a short soft fuzz on my head, which I enjoy feeling, as have a few friends and family members. It seems to be growing back as dark as it was, with a little white flash at the front, which I had before too. Some people’s hair grows back white, which I thought would be quite cute, but it’s not looking that way. It’s incredibly soft, like baby hair, but it may yet go very coarse before returning to something like it was. I’m curious to see what happens.

Additionally, I lost most of my eyebrows, eyelashes and other body hair. I noticed just a few days ago that while my body hair is a bit shyer about coming out, I have regained eyebrows, eyelashes along with those annoying facial hairs which I now pluck again. I’m really appreciating the eyelashes in particular. They give a lot more colour and shape to my eyes than I would ever have realised.

Energy-wise, I have returned to my two weekly T’ai Chi classes and after a couple of weeks when I had to sit down to take a break between exercises, I am now doing it all the way through, along with everyone else. In fact, on Friday the teacher asked me and another student to go through the moves at the front of the class, while she went round to help others who were struggling with certain moves. I was well chuffed!

I’ve also managed some cycling, walking in Edale, a break in Snowdonia – went up Snowdon… by train though, not walking! I’ve even done some hoovering. My back seems to be less sensitive now – some days I can do the washing up without needing to sit down due to back pain half way through. I still take paracetamol at times, but much less frequently.

The menopausal symptoms consist of hot flushes, mostly at night or in the evening. I’m tending to just sit them out, whipping off layers of clothing until I cool down and need to put them all back on again. Having almost no hair really makes a difference to my temperature management – quite often I’m shivering too, so my range is much wider than most women’s.

The main thing I’m dealing with now seems to be psychological healing. I was concerned about feeling depressed and lacking motivation to get back into living again. I cry quite often, but even this is lessening, so it’s not every day now.

Thinking the emotional aspects might be due to the menopause, I saw my GP who suggested HRT and issued a prescription, but I find myself loathe to take it, so I’m going to see how I fare without, especially as she said that it could take a few months to make a difference and I might start to bleed again in the meantime. That is surely unfair – the main, possibly only, benefit of menopause is that you stop bleeding!

On Monday 5 September, I went to my first Haematology appointment since the transplant. In the waiting room I sat next to a woman who turned around and said “I recognise you from your blog.” Fame at last!!!! 🙂 She was there with her partner, a woman who has myeloma too. I was so delighted to meet another lesbian around my own age, I think I may have been a little over-enthusiastic and talkative on meeting them. (Apologies to you both if you felt overwhelmed.) Remember that myeloma is much more prevalent in older men and this is noticeable in clinic.

I was still feeling pretty rough, despite noticing small improvements… poor taste and appetite, coated/swollen tongue, not-quite-diarrhoeia, fatigue and weakness, low energy, low mood… But Prof being the Prof was fairly dismissive. Despite asking me how I was, I didn’t feel like he really wanted to know, as long as I wasn’t keeling over or running a high temperature. Funnily enough, his dismissive attitude made me feel like there was nothing to worry about, all going as it should – quite reassuring actually.

So when I left the hospital, I felt a bit more lively and for the first time since leaving hospital, I felt like I actively wanted to see someone and have a chat, so I called my friend Debbie. She was at home and invited me round. We spent a very pleasant couple of hours, eating her home-made fruit pie, home-grown pears and catching up. I had a sense of returning to something resembling normal.

The next day was the first day since the transplant that I had a sense of the future, i.e. “what do I want to do now?” I began feeling slightly optimistic, if a little confused and uncertain what that future might look like. Up to this point, I’d literally just been surviving from one hour to the next, one day to the next, feeling very weak and sorry for myself. I’d had no thoughts about the future.

Prof Russell had asked me to do another 24 hour urine sample, which I brought in the following Monday so they could have the results back in time for my next appointment two weeks later. This test checks for a particular protein (Bence Jones) in the urine, which is indicative of the type of myeloma that I have.

I returned to clinic on Monday 26 September, where they had the urine and blood test (Serum Free Light Chain) results from my previous visit. Again I saw Prof Russell and was calmly told that there was no sign of any myeloma protein in my urine and the kappa:lambda ratio in my blood serum was 0.8. The normal range is 02.-1.6, so I’m within the normal range. These two sets of results mean that I am in complete remission!

This means that the stem cell transplant has been a success and is cause for celebration. But somehow I just accepted the information without any fanfare or great jubilation. When I’ve mentioned the remission to friends and family, they’ve been understandably delighted for me, so it’s made me wonder why I’ve not been more thrilled. I may need to think/write more on that subject…

On 23 September, I reached SCT +50 – that’s halfway to recovery from the chemo and transplant, in very general terms. They expect it to take about 100 days. For some it can take quite a while longer. However, I think I’m doing quite well. And on Thursday 13 October, it was ten weeks – Day 70!

You’ve no idea how many times I started writing this post, including various milestone days, which are no longer so relevant… and still time went by and I hadn’t actually completed the writing or posted anything.

I’ve had two infusions of Zometa (zoledronic acid) since leaving hospital. Zometa is given to repair bone damage and strengthen the bones, which are weakened by the disease. It is also used in the treatment/prevention of osteoporosis – another reason why I may not need to take HRT.

I have an IV infusion every four weeks, which entails me going into the Haematology Day Case area, where I get to sit in a big comfy armchair and see a different nurse each time. I do wish there was some consistency, so familiarity and rapport could be built, especially familiarity with my unyielding veins!

They have to insert a cannula, now that the Hickman line has been removed. The actual infusion takes about 15 minutes, but with all the faffing around… waiting to be seen, having a heating pad on my arm/hand to bring my veins up, having the cannula inserted, nurse going off to fetch and check the vial of Zometa, nurse having a chat… (yawn), having the saline before and after the actual medication, and making the next appointment, it all takes much longer. Last week, I was in there for two hours!

Lastly, the next stage on the Myeloma XI trial, post-SCT, is being randomised for on-going maintenance – between taking Revlimid or no medication. I was nervous as I had such unpleasant effects on Revlimid at the initial treatment stage, yet Dr Williams had advised me that at this maintenance stage, Revlimid has been found to be very effective. So, I had very mixed feelings when I heard that I have been randomised to take Revlimid again.

Bear in mind that the initial treatment was for me only 4 cycles (4 x 4 weeks = 112 days) and would only be at most 6 cycles if a good response took longer than mine did; there was always an end in sight, even if it didn’t feel like it at the time. With maintenance medication, it’s ongoing, so I need to find a balance between effective treatment/keeping the cancer at bay and quality of life. I really don’t want to live for 10 years if I can’t enjoy food, have no appetite and feel sleepy/tired and disconnected all the time.

Dr Williams has said that if the effects are too bad, she can reduce the dose, or if necessary, I can stop taking it altogether, which would mean coming off the trial. I won’t start to take it until around Day 100, so I’ll wait to see what happens.

* * *

So, finally things are shifting. I know that compared to some who have gone, or are currently going, through the chemo and transplant process, I have had it relatively easy. But it really is NOT easy, not for any of us. And the thing that frustrates me most, even while I understand it, is that people who have not been through this have no idea and just don’t know and why should they?

On a totally rational level it’s absolutely fine and understandable that someone who’s not been through it, or anything like it, doesn’t know and can’t fully appreciate how it is. On a more emotional level, I get to feeling like I (and others going through this) am on one side of a road and everyone else is over the other side, getting on with life, work, having fun or not… Sometimes the road is a little sandy lane, which I can step or reach over for a moment of friendly connectedness, but at other times, it feels like a busy six-lane motorway – impossible to cross.

This sense of separation still makes me feel less confident socially, even while I’m feeling more energetic and in some ways wishing to re-engage in social life. In other ways though, I feel a lot more reclusive. I feel a bit bitter about the lack of contact from some people; and I am even less able/willing than I ever was to indulge in small talk.

For all these reasons, I often feel awkward in social situations, and may come over as withdrawn, shy, ungracious or even rude. It really isn’t personal… well, only personal to me.

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5 Responses to Long time no write…

  1. Natasha says:

    Good to hear you. The road image shares something hauntingly sad. And also warming in its act of connecting me to your world as it feels.


  2. Sandra Abraham says:

    So glad to hear from you was starting to get worried !!! I’v had my transplant now and your blog help’d me a lot thank’s.


  3. Hi Jet, this long awaited blog is fantastic. It really lets us know what’s been going on, and also learn new facts, like Zometa for osteoporosis. You seem to be having good care, if not consistency of staff. Obviously you have a good immune system and strong constition which helps. I am amased at how much the hospital can do and how much they know about your condition, as they must about what ever condition each doctor specialises in. I appriciate your more sad moments and the bitterness and crying,( which is good for us). I understand what you mean about the question How are you, I asked once and you replied “what do you think, I’ve got cancer” or words to that effect. I am genuinely interested in how you are, and not just how are you and your cancer. I am glad you have this blog, and always enjoy reading it.

    You are quite amazing really, your zest for life. Even after being so ill, you still manage to pack more into your days than I do! I am glad you still have the capacity to enjoy life/food/nature/yourself.

    I had a health scare lately I wanted to share with you. You know I have Barretts Osesophgus, which is irreversable, and can turn cancerous, well recently I began to loose weight without intending to. What made me put myself on the scales was when my trouses kept falling down and clothes were not fitting right. I noticed that I had lost 4lbs. I don’t loose weight, I stay the same whatever I eat, always have done, 8st 7oz all my adult life until I quit ciggaretts and went up to 10st which I’ve been for over 10 years now. Well being the hypocrondiac I am, I imeediately assumed the BE had turned cancerous, and sudden weight loss is a sign!! (no wonder I piss people off – I piss myself off). Anyway, after that I continued to weigh myself daily and was constantly droping! I had lost half a stone, that’s unheard of for me, so I went into paranoia mode and felt my life was over, I am so dramatic and rediculous really. I was going to go to the Drs, but didn’t get round to it, my head was in a spin. Then I ran out of the serrapeptase ensyme I have been taking for my IBS and assoiated conditions, and my symptoms began to come back, stomach spasams, need to go to the toilet, but being constipated, having very painful stools and anal fissures reopened! Within days my weight was back to it’s normal 10st, and I was so releived!. But my IBS was back, my stomach felt bloated and passing stools was difficult and painful.

    Then the penny dropped. The half a stone I had lost had simply been shit! I was full of shit!!!! I began my new packet of serrapeptase a few days ago and my bowles are fine, I have no stomach cramps, bowles movements are most satisfactory, and painfree!!!!!!!!! That is nothing short of a mirical! You know how long I have suffered with my bowles! Now I have to go to my doctor and tell him I am taking this suppliment, as always suggested, but I know he will say that he can’t advise me because it is not a drug so he can’t recomend it or point out the pro’s and con’s. So I am going to carry on taking it and looking into it at the same time.

    Sorry to reply with an essay! lol See you at the Longbarn xx


  4. Glad to hear you are progressing… and yes, hormones can change your mood a lot. THere are two options you might consider: one is to take the homopathic substance called SEPIA which comes from the ink of the squid and is designed to lift the mood; great for chemically sensitive types. The other option might be to use BLACK COHOSH or WILD YAM cremes for the hot flashes and they also help with lifting the mood…. I used those during my m’pause and they worked great – never took the chemical HRT because some of them are derived from the urine (or possibly something else) of female horses and I love horses and don’t like what they are put through to get the chemical. NOt to mention that I basically try to live organic.
    Anyhow.. hope this helps… intending your recovery continues without disruptions.


  5. Paul Creek says:

    Hi Jet
    As promised read your blog and signed up! its giving me a good insight as I to have light chains (you commented on my posts on the Myeloma site).it seems you have plenty of enthusiasm which helps and spark.I to am similar in nature and quite an outdoors type of person. I enjoyed reading about your experience with SCT.I will look forward to more in future,I hopefully am due for SCT early 2012.
    Take care Outdoors Paul


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