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Stem Cell Transplant Journey

Month

February 2016

Day +13 Why I love eating NHS bedsheets

The griddle is smoking hot and a well-seasoned, lightly oiled steak is cooking away before my very eyes and when the steak is removed from the griddle with perfect seared markings. I’m just a big glass of red wine and a raspberry and chocolate dessert away from paradise. I pierce the steak with my fork and the knife glides through the meat as if it were butter, I lift the fork to my salivating mouth and then I’m awake and find it’s an NHS bedsheet between my lips. I’ve had a number of odd dreams this week, the most nefarious are the ones where delicious food is abundant but I have a nasty case of mucositis which makes swallowing a modern day form of torture.

Friday (Day +7) night I went to bed; I suspect I’d probably slept a few hours before the pain in my throat woke me and kept me awake for the rest of the night. In a few hours the mucositis had advanced so much so that it was excruciating to swallow my own natural saliva, any food / drink and without doubt ruled out my ability to wash down thirty tablets every day, some of which are enormous. Of course the blasted feeding tube was recommended at this point and I remained as stubborn as ever that I would get through the experience without yet another unwanted tube in my body. All my medications were are this point changed from oral to IV, along with an additional prescription for a bag or two of fluid to keep me hydrated. Unfortunately, administering the drugs by IV made me very nauseous nevertheless there was no other option than to soldier on intravenously. I won’t go into a blow by blow account of the last week because frankly, apart from when I was asleep there were no pleasant moments. For the record, if anyone has to go through what I’m going through and they are less phobic about tubes etc. then I think the feeding tube would have been the sensible way forward, however for me the stress of the phobia was more distressing mentally than the physical pain I was suffering.

Most days I can take a deep breath and hold back any stray tears but there are some people in life, for whatever reason, no matter how hard you try if you feel in the slightest bit teary you will overflow in that persons presence. With this in mind (as well as the fact it really hurt my throat to cry) and taking into account my druggie in detox look (puffy face, needle marks arms) I decided to cancel visitors during the worst parts of the last week. It’s been a very boring week, as it’s hard to focus when you feel utterly rubbish on even watching TV failed to grab my attention. I did look forward to the emails from my sister-in-law updating me on how Aster is, often with a photo or video attached. Thankfully Day +12 I started to feel sturdier and I seem to be gaining strength with each day.

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Therefore it’s just as well I’m not related to Samson because my hair has started to come out as expected. At the moment the ‘fall out’ is minimal and thanks to shaving the vast majority off, prior to admission, I am confident that I’m not going to find myself with a huge handful of hair when I wash each day. The first time I lost my hair was a very disturbing and although this time it is easier because it’s only one week of chemo and I’ve been here before, it’ll still be July before my hair can even be considered a severe pixie cut.

Naturally my fundraising balance hasn’t budged at all whilst I’ve been in hospital. The good news is that the Walkers with Style Group, of which only four have signed up so far, have to date raised £3747 (£402 of which is being raised for Crohns & Colitis UK) Three more members need to set up their JustGiving pages and crack on and raise a minimum of £300 per person. Therefore I think it’s safe to say that between us we will raise approximately £5000 for Anthony Nolan and £500 for Crohns and Colitis UK. Just like last week, when I’ve had moments to work on my fundraising plans I have and I’m extremely excited to announce that Hatfield Forest, my local National Trust venue has provisionally agreed to my organising a Charity Dog Show in May. Woof Woof!!!!

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Sponsor me now! Yorkshire 3 Peaks Challenge. All details can be found at: http://www.justgiving.com/Rachel-Jackson13

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Day +6 107 opportunities

It’s been an incredibly tough week. I started to feel the effects of the high dose chemotherapy combined with the intravenous ciclosporine on Day 0. It was hard to muster up excitement for the arrival and infusion of the stem cells, as I fought nausea, hot flushes and stomach ache. Thankfully by the late afternoon I started to feel well enough to shower, put on my face and have enough energy to face visitors. The stem cell infusion went well and I was lucky enough to be treated to a big juicy burger, afterwards.

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Day 0 to day +4 I really struggled to cope with the volume of toxins which had and were being pumped into my body. Nausea, stomach aches and generally feeling unwell were my constant companions. Thankfully, the doctors transferred me from IV ciclosporine to oral tablets and since then I’ve increasing felt better. However, I’ve just been informed I will be returning to IV of ciclosporine because my levels on the oral tablets are up and down. To be honest, the very idea of the IV of ciclosporine fills me with dread. The antiemetic tablets aren’t cutting it with regards preventing sickness when I’m receiving the evil drug, I discussed with the doctor having an IV antiemetic prior to ciclosporine. It’s worth a try.

I’m renaming ciclosporine to siclosporine!

I also have a mild case of mucositus which is a common side effect of the chemotherapy. As my levels, including those all important neutrophils, are dropping there is a real risk this may worsen. Right now, it’s similar to having a sore dry throat and I’m religiously using the mouthwashes in an attempt to prevent it taking over my mouth.

Food and drink continues to be a daily struggle. I do yearn for food, the hospital food is rarely what I desire invariably I want moist, soft foods such as jacket potato with cheese and coleslaw, hearty soups with bread which has been throughly dunked and of course ice cream is always a winner. I have absolutely no desire to drink (and yes that includes champagne!) Every drink tastes insipid, I literally have to force myself to takes sips of fluid all day as a result I’m not taking on board enough fluids which isn’t ideal. Consequently, I’ve been prescribed sodium chloride which is administered by drip over several hours.

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I can confidently state that so far this transplant has been a good deal more gruelling than my last and looks set to continue that way. At times it’s hard to stay mentally strong when you physically feel so weak and zapped of all your strength, coupled with the reality of having had a previous transplant fail there have been a few moments when I’ve wondered if going ahead with a second transplant was such a wise idea. If only crystal balls worked, ‘would the AML return without a SCT?’

Todays good news stories. I had my final dose of methotrexate, a chemo drug, which means all the chemo drugs are behind me. My neutrophils are now 0.1 which suggests that the chemo has worked its ‘magic’ on my bone marrow, hopefully giving Dylan a decent shot at cracking on with the job before my bone marrow tries to make a comeback. The consultant is happy with my progress and we discussed the 3 Yorkshire Peaks today, she believes I should be up to the challenge which is 107 days away!!!

I have roughly a week to ten days of trying to avoid infection, coping with the ongoing drug regime (30+ pills on top of the IV!) and all its side effects whilst Dylan settles in and starts to make lovely new neutrophils etc. for me.

As the window of feeling okay is most likely a very small one, due to the IV of siclosporine commencing tomorrow, I’ve spent the morning progressing fundraising plans for Anthony Nolan. After all I only have 107 days left to fundraise! A quiz night early April is looking like a goer and I’m touching base with another organisation with an idea I have which I’m extremely excited about. I don’t want to spill the beans on the idea until it’s looking viable.

I’ve a late night ahead of me as the sodium chloride drip has another five and a half hours to go. So, I’m going to watch a movie or two a very kind friend brought in today.

Sponsor me now! Yorkshire 3 Peaks Challenge. All details can be found at:  https://www.justgiving.com/Rachel-Jackson13/

Day 0 Take 2

Today is the big day! Yesterday, was the toughest day so far physically and mentally. If memory serves me well, I’ve the best part of a week feeling rough ahead of me (assuming I stay well) before I start to feel ‘normal’. As the Dr said, they have pumped some extremely nasty drugs into me this week and as a lessons learnt from my previous SCT the Ciclosporine (immunosuppressant) levels have been dramatically increased as well as administered straight into my vein.

All in all considering what I have been given this week I don’t feel, too unwell. I was rather emotional yesterday, I suspect thirty six hours of drips combined with feeling under the weather and missing my fur kids an awful lot, left me quite teary. At times I’m fed up with the needles, prodding, poking, the continual ‘what nexts?’. I was diagnosed eleven months ago and if I’m lucky by July 16, I should be starting to regain my life. Eighteen months is a long time to experience the levels of stress which accompany critical illnesses. My mortgage has had to be paid even though I’ve hardly worked, I’ve had to face some very horrid procedures over and over, as well as coming to terms with the silent failure of my own body and reality that the AML could return. One big cause of stress is seeing how what is happening to me impacts upon those around me. Unfortunately, it’s not possible to keep acute leukaemia hidden from people, I have often wished it was, to spare them the pain.

Yesterday, I felt this weight combined with my own fear of ‘what if I go through all this again and it doesn’t work?’ I believe it will work, certainly every effort is being made to suppress me and provide Dylan with every opportunity to take over.

After receiving Dylan’s stem cells, later on, I am looking forward to sending my friend off to buy me a big fat juicy burger and a portion of chips with skin on. I’d request ice cream for dessert but I suspect my cravings are greater than the size of my belly. I know the NHS have a tight budget for food and although it’s on the whole been edible it’s not been very satisfying. Every day I dream of food I crave, most of which is beyond the reach of my hospital bed. On Wednesday, the dietician visited to give me the warning ‘if you don’t eat we’ll have to insert a feeding tube’ conversation. It’s just their scare tactic to ensure you to eat when you least feel like eating. (I’ve heard other patients getting that pep talk, so I didn’t take it personally) Although I’m not particularly hungry, I eat what is served up and throughout the day I yearn for tastes and textures of foods. I told her there would be no need for a feeding tube.

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Culinary hospital delights 😋 They look are appetising in black & white

The physio also dropped by to give me a pep talk. I appreciate many people embarking on a SCT are in considerably worse health than I am therefore it’s a very relevant conversation under the circumstances. Even so I was taken aback when she asked me if I was able to walk. I didn’t mention that in less than four months I intend to trek the Three Yorkshire Peaks, I suspect she’d try to rein me in telling me to take it easy!!

The stem cells are being couriered as I type, I heard yesterday evening that the harvesting went well and a good number of cells were collected. It’s good to have the majority of the nasty drug regime behind me and to know that within hours my bag of hope will be infused.

Sponsor me now! Yorkshire 3 Peaks Challenge. All details can be found at:  http://www.justgiving.com/Rachel-Jackson13

Day -3 How to look good bald

Day Zero is drawing closer!  I’m nervous and I’m hopeful. SCT is a risky procedure and the likelihood of GvHD (Graft v Host Disease – rejection) is high, at the same time if it’s successful the benefits can hardly be justified with words. I didn’t share the letter I sent to the previous donor, Superman, because I felt it was a personal message between two people. I’ve reviewed and amended the letter ready to be sent to Dylan via Anthony Nolan. I’ve decided to share part of the letter, this time because if it inspires one person to register with Anthony Nolan or Delete Blood Cancer, to start giving blood or platelets to donate money to Anthony Nolan then sharing it will have been worth it.

Every day we say thank you, when a person holds open a door, makes us a cup of coffee etc. so to say Thank You to you for donating your stem cells seems to fall rather short when demonstrating just how grateful I really am for your stem cells. I wish I had the words to express the full depth of my appreciation for your selfless act of kindness. The ‘gift’ of your stem cells is the gift of life, there really is no greater gift a person could receive and I will be thankful to you every minute of every day for the rest my life.

I do not have children and I’m informed a cat and a dog do not count. I do however have five nephews and a niece, all of whom I adore. They are all old enough to appreciate the gravitas of my situation, I’m close to them and fully aware of just how much my illness frightens and pains them. Your donation gives them hope that I’ll be there to get them out of the many scraps they are bound to get themselves into and gives me hope I will be there to see them achieve their dreams and more over the coming years.

I doubt I’ll have children but with my growing menagerie of animals, nephews and niece I’m not sure I’ll have the time! Maybe I’ll marry or I might just travel the world….. All the options I have are due to your actions.

The likelihood of going on to live a normal life after having acute leukaemia is not something I was entirely convinced I would have, when I was diagnosed. With your stem cells and the help from my medical team I will get that chance. This isn’t just an opportunity to live a normal life; it will give me the ability to help others. Thanks to your kindness and generosity, I can go on to assist others who will be diagnosed with blood cancers through volunteer work and fundraising.

I was admitted on Saturday and no time was wasted, before I even had a bed I want given my first conditioning chemo. Sat, Sun and Monday I received Fludarabine, as a result I had a very mild headache otherwise I felt fine. Yesterday they started administering the Ciclosporine loading dose intravenously. I’m not receiving the normal chemo regime for an allogeneic transplant and the immunosuppressant routine is different, as well. Today, is a busy/long day. First of all I will receive Ciclosporine which we are aiming to do over four hours, then that will be followed by Fludarabine and Melphalan chemo along with pre and post hydration. Tomorrow is a ‘rest day’, I will receive Ciclosporine, no chemo will be delivered so that my blood isn’t too toxic when the Stem Cells enter.

I’ve kept myself busy with my mindful colouring book, reading, watching Breaking Bad and yesterday one of my visitors bought me a very exciting gift, Lego!!! I may leave that for my ‘rest day’.

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The chemo drug Melphalan will cause hair loss. I found losing my hair, last year, incredibly hard emotionally. Just as my hair was beginning to reach a length which could be styled, I found myself facing the loss of my hair again. This time I decided to have my hair shaved off, my local salon very kindly shaved my head and although it’s not a look I would ever choose, being the one taking control of the hair loss has helped mentally. I can look in the mirror without seeing a cancer patient, I feel confident enough not to wear the turbans socially which is significantly different to last April. I put most of this down to not having handfuls of hair come out in the shower, waking up to a pillow covered in hair and ultimately being forced to shave off the few remaining strands.

Here is my guide to looking good bald:
1. Confidence – just think you’re a Badass
2. Highlight your assets – slap on a fabulous lipstick, whip out the eyeliner.
3. Excuse to be more feminine – ignore those jeans and flats, pick feminine clothes. (Bit hard in hospital!)
4. Earrings – a trusty pair of danglers helps

I’m just looking forward to the rainbow of colours I’m planning to try as my hair grows and I inevitably go back to black.

 

Sponsor me now! Yorkshire 3 Peaks Challenge. All details can be found at:  http://www.justgiving.com/Rachel-Jackson13

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