Pricks and possibilities…

I went to see the nurse at my GP surgery on Monday for the first of a round of new vaccinations I need now that it’s six months following the stem cell transplant, which would have wiped out all the immunity I had from childhood vaccinations. Because the transplant has failed and I’m now receiving new treatment, the nurse wasn’t sure if I should have the vaccinations, so I had to go away and find out from the Haematology team.

In Daycase on Tuesday having my third Velcade injection, Sarah confirmed that yes, I should go ahead with the vaccinations, so on Wednesday I was back with the nurse who duly pricked me – twice in the left arm and once in the right. I only felt the latter and even that only briefly, but it ached for a couple of days afterwards. She warned me I may feel a bit tired, achey and ill later, but I was fine.

I have to go back next month for another couple and then one month later for a final boost. (Check out the list here). I’m rather inured to the whole process of being pricked and prodded, so this is really minor stuff. I don’t even get nervous about them. For those of you still terrified of needles, I have to say “Hah! Get over it!” 😛

Yes, I’m well in spirit. Considering how distressed I was a few weeks ago when I heard of the relapse, I seem to have rallied round remarkably – maybe that’s down to the Dexamethasone…?

I’m not yet fully in rhythm with the new treatment regime. I seem to have mostly adapted to taking Dex again, but it’s all very up and down – two days on, one day off, two days on, three days off – it’s hardly surprising my body’s confused. Quite different to the steadier 4 days on and a week off of last year’s treatment.

The first night, I was wide awake all night and then very snappy the following day. This week, I’m doing much better, except that tonight yet again, I’m wide awake through the night after less an hour of sleep earlier on. Mostly the Dex makes me feel slightly energetic, but not as wired and manic as I experienced previously. Other people CAN get a word in edgewise.

I had an optician’s appointment today, where I found out that my glasses prescription has changed quite noticeably in the past two years. I don’t know whether that’s to do with the cancer and its treatment or not. Anyway, I suspect that Dex had something to do with my decision to plunge for a rather groovy new pair of glasses for the new prescription – I shan’t mention how much they cost! That was preceded by lunch and a little flurry of spending at H&M – a little blue skirt and a cosy if slightly tight, cream zip-up sweater – I just couldn’t say no. 🙂

One Myeloma buddy has warned me that she felt totally wiped out in the week off medication, which is a bit of a concern. But in this specialist group, we’re so well-versed in diversity – everyone’s disease, treatment and response is SO different, that you can’t really use anyone else’s experience as a template. That’s a pro and a con, I guess.

So, I shall continue to expect to feel fairly lively and well until proven otherwise and aim to get away to visit family down south next week. I was waiting to hear if it’s okay to travel abroad so I could include a trip over to the continent for a couple of days – Bruges quite appeals. I’ve not heard either way, so as long as I feel up to it, I’m just going to go. I’ve got an EHIC card so if anything happens, I can always nip into a hospital in Belgium. I really don’t think it’s any more likely for something untoward to happen across the Channel rather than on this side and they’ve said it’s fine to travel in the UK.

A slightly bigger, bolder trip is also on the cards though… My mum and I are hoping to go over to New York in March to visit my brother and his family. That will be after my second cycle of treatment, so providing I continue to respond well and have no difficult side effects, I’m pretty sure that they’ll let me travel. Of course, I’ll need to take on travel insurance that covers pre-existing conditions and I’ve already begun to do some research. Prices I’ve seen so far have varied from £1o2 to £1499 for just a week! I can’t get an annual policy, but that’s ok. One step at a time!

The side effects I’m experiencing are bearable: a weird gummy, soapy taste in my mouth, swings of tiredness, snappiness and manic insomnia, very mild tingling/numbing (peripheral neuropathy) in my feet and hands, a healthy appetite this time  – that’ll be from the Dex too. So far, no problems with low blood pressure or shingles.

I am having a lot of hot flushes and sweats – I’m not sure if they’re due to the meds or just the continuing saga of menopause. I stopped taking Black Cohosh while I began the new medication regime, but I’ve decided to start taking it again, as I think it was helping.

I’m also currently experiencing a slightly dreamy acceptance of what’s happening and a softer, more compassionate approach both towards myself and other people, which is most welcome after quite a long period of feeling depressed, bitter and angry. I don’t know whether this is a spiritual or medical response, but either way, I’m appreciating it. And I think probably those around me are also quite thankful.

As far as treatment goes, I expect to be on Velcade for between four and eight three-week cycles. That means 3-6 months, with any remission achieved unlikely to last long, but then there’s the next bit of the plan – a possible donor stem cell transplant, which I’m not quite ready to face fully or discuss at this point. So, until then, I’m taking as much holiday, time out, playing and being reckless where I can. Who knows how long I’ll have to do that? Watch this space!

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8 Responses to Pricks and possibilities…

  1. Tom says:

    Hi Jet
    Well I did it correct looks like I now will be getting your thoughts and your rambles 🙂
    You seem to be doing pretty well with this treatment, long may it continue.
    Hope you soon getr Ins sorted out and are soon you and your Mom are in New York.
    Keep strong and Keep Well.

    Love Tom “Onwards and Upwards” xxxxx
    ps now lets see if it posts??


  2. wow, what a busy woman you are, hope you get to New York!, thanks again for sharing your journey. lots of love xxx Pauline


  3. Mavis Nevill says:

    Hi Jet
    So glad that you have emerged from the depression that, not surprisingly followed your disappointing response to the SCT. I am sure your explicit record of your treatment and reactions will be so helpful to others.

    I am glad to hear you are taking positive decisions about trips etc. After all, it is YOUR life. I have a friend who has secondary bone cancer and they told her she shouldn’t have her horses. (She rescues them!) But she does anyway and last month birthed a foal from breech position, including having to go “inside it” under instruction from her Vet! The medics would have had a fit because of her supposed lack of immunity following chemo, but as she said …. the alternative is to sit down and wait to die.) I’m sure her attitude and yours will ensure a much longer life that just giving in and being a patient.

    “Go for it girl!” is what I say.

    Keep on inspiring us. Love Mavis


  4. Snip says:

    Hey there, Jet. Great to hear you are doing so well. I had to smile: I hit that “dreamy” state almost right away and never really got out of it except for brief periods, and when the dex was at it’s worst. Still kind of there… I take it as a blessing, for sure.

    Yeah… definitely live your life!


  5. Sandra abraham says:

    Hi jet glad to hear your feeling more yourself, and getting back into the routine of pill popping !!!! I’v just booked a week in Benidorm in march and I can’t wait to get a bit of sun on these old bones !!!
    Sandra x


  6. Pam says:

    I am glad you are feeling better. So therapeutic to read how you are getting on as I will starting the Velcade etc on Monday – yiiikes! Somehow good to know what’s ahead ……. So important to start organising holidays – go for it! xx


  7. Lorraine says:

    I am just going to sign up for the Myeloma XI trial today. I look forward to reading your blog to see what is ahead for me!


  8. Marisa says:

    Hey cuz-in-law,
    REALLY hoping you can make it over here in March. Would be great to see you. I saw Cammie last night, and we were marveling at your incredible attitude. Of course one asks oneself, “how would I do in Jet’s situation? Would I handle it as well?” and one never knows until one’s in the situation, but the answer still comes back to me “probably not.” Not trying to turn you into a hero or martyr here–just noting general awesomeness and admiration. Glad you’re taking life by the balls and traveling up a storm. Enjoy Bruges!


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