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Stem Cell Transplant Journey

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September 2015

Day + 29 Eradicating tentacles

Guess where I was today…? Barts, of course, I rarely venture beyond my home or Barts at the moment. Today, I had a routine set of bloods as well as my first chimera test (assess how much DNA in my blood is Superman and how much is me) I’m not entirely sure when I will receive the results, I’m presuming when I’m in clinic next week. I also had my Hickman Line removed!! To remove the Hickman they had to inject anaesthetic into the breast tissue which was somewhat painful, once the area was numb they tugged at the Hickman to pull it out. Sometimes the tissue has grown around the line, if that is the case the doctor has no choice other than to assist removal by making an incision. Thankfully, a few good tugs and the line came out without the need for a scalpel. I won’t lie it wasn’t a pleasant sensation but I’ve been through worse over the past seven months. At the moment the wound is very sore, that said I am over the moon the line has been removed. Admittedly it was wonderful for having daily bloods, receiving drugs etc. but I never got used to a tube coming out of me. Also, when I showered, I showered with a reminder of cancer, when I dressed I preferred to hide it therefore once again cancer was dictating a daily part of my life and so on.

Hickman Line. The end with the red & white bit is where they drew blood. The other end...was in the top of my heart!
Hickman Line. The end with the red & white bit is where they drew blood. The other end…was in the top of my heart!

Naturally, most people are asking how wonderful it is to be out of hospital. I don’t like hospitals even if these days I appear really comfortable with Barts, even so being away from Barts is strange after spending the vast majority the last seven months there. I can only describe it as having a foot in both worlds consequently I’m not a fully-fledged member of either.

I am now an outpatient which means for me at this stage in my post-transplant progress I frequent the hospital on average two to three times per week. By the average person’s standards this is a heavy commitment, unsurprisingly when I’m at the hospital without fail I bump into and catch up with other patients.

Outside of my hospital commitment to a certain degree I’m fairly house bound due to the vulnerability of my developing immune system. I have lost my immunity which I acquired throughout my life such as childhood vaccines. For example I was invited to go to the theatre at the end of November, sadly I had to turn the invite down because a theatre is packed full of people sitting in extremely close proximity and I certainly won’t have received any of the childhood vaccines etc. by then. Every invite requires a degree of risk calculation before making a decision.

I also have a number of significant decisions to make now that I am an outpatient. How long before I return to work? What is best for my health? How do I continue to pay the mortgage etc.? Just when I feel that I am kicking out the tentacles of cancer within my life, I discover another tentacle needs to be dealt with. Over all I’m definitely eradicating more than I’m uncovering.

My life is still extremely centred and involved with blood cancer, which isn’t ordinary and I suspect I will always have an involvement in that ‘world’. Stepping away from that environment into a more normal life is difficult to rationalise at times, for example hearing and seeing frivolity or listening to people moan about puerile things whilst on the other hand you are accustomed to daily discussions about the harsh reality of your potential death and that of the patients around you. It grieves me to say this but I suspect a few of the patients who have buoyed me up and who in turn I’ve supported may well pass away as a result of their blood cancer. I have never before encountered issues in life of such gravitas and definitely not on the scale I have recently. What I have been through and witnessed has and still is altering me as a person; my perceptions, viewpoints, what’s important etc. Therefore slipping into normality is not realistic, for me it’s more about adjusting to a new ordinary whilst ensuring I take on board the changes within me. Already I feel some ‘doors’ are slowly closing from the life I lead seven months ago. This isn’t necessarily a bad thing but in certain instances it’s sad, the silver lining is that I’m able see new ‘doors’ are opening.

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Day + 22 Bring on the raspberries

It’s wonderful to be back in a more rural environment, I desperately miss the tranquillity offered by large open spaces when I’m, stuck in the city so much. This morning I took an enjoyable and lengthy walk, for first time since having my transplant, in the local National Trust area. It was invigorating to get some fresh air into my lungs and has reminded me, I need to turn my mind to getting fit for the Yorkshire Three Peaks Challenge next May. I also need to start putting my thinking cap on for fundraising ideas.

Not the best autumnal weather, still a fabulous setting for a stroll
Not the best autumnal weather, still a fabulous setting for a stroll

Yesterday, I returned to Barts as an out-patient for a routine cyclosporine level test and the normal round of bloods. I’ll probably receive and discuss the results with my consultant in clinic later in the week. No one has telephoned me which is the normal cause of action when there is an issue therefore I shall am assuming there was nothing out of the ordinary to cause concern. Whilst in Barts, I meet up with my Clinical Nurse Specialist as she wasn’t available on Friday when I was discharged and we had a very productive meeting. I was extremely pleased to hear that my immunity levels are now high enough for me to eat what I like so pate, soft cheese, raspberries etc. can all go back on the menu. It’ll be nice to be able to go out and eat what I desire. A punnet of raspberries has been purchased and each one with be savoured. Other promising news is that, as long as the consultant is happy with my progress, my Hickman Line can be removed possibly as early as next week. In the grand scheme of things, these are baby steps in the right direction; even so to me personally they are gigantic. Cancer will no longer interfere with my meal options, prevent me indulging in a relaxing bath or dictate the clothes I wear in an attempt to cover the line. A little less cancer in my day to day life…..Whoop whoop!!

She informed me that should I ever need a blood transfusion, the blood ought to be irradiated blood. Naturally, I am hoping never to require blood again but should I need it normal non-irradiated blood could cause transfusion-associated graft versus host disease (TA-GvHD) which is a rare but serious complication caused by lymphocytes in the transfused blood. These cells may recognise the patient as ‘different’ and cause severe illness. Irradiation of the blood prevents lymphocytes causing harm and the radiation will not harm the patient. Consequently, I have yet another medical card to carry around in my purse. I tell you, they let you off the hook with one rule and give you another to start living by!!!

The day unit was jam-packed so instead of being placed in the treatment bays I was sent into another room where two people were having their stem cells harvested. I have a sneaky suspicion I know the recipient of one of the donations and it brought a smile to my face, thinking he’ll receive his cells today, as I know he’s been eager to progress with his treatment. It was fascinating for me, a recipient to see the harvesting underway; it was precisely how it had been described to me. It really isn’t invasive, no one looked uncomfortable, a machine just churned away slowly separating the stem cells and returning the rest of the blood into the donor. I’d say more than anything it’s boring for the donor as they have to sit quite still for a few hours. I hope they went to the bathroom before starting the harvest.

Witnessing the harvest prompted me to do something I promised myself I would do once I was out of Barts; I registered to be a volunteer for Anthony Nolan. I signed up to be a volunteer at a donor recruitment event, a donor visitor and / or to help teach 16 – 18 year olds about the importance of donating bone marrow, blood and organs. I’d happily be involved in one or all of these activities, I owe Anthony Nolan my life so the least I can do it try to recruit more good Samaritans like Superman. I’m not able to give blood etc. due to my medical problems and regret I never did, if I can enrol others than I’m going par the way to pay my debt and rectify the wrong of my squeamishness which always held me back.

Delicious, nutritious and disappearing FAST!
Delicious, nutritious and disappearing FAST!

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

Day + 18 Fingers crossed for cat hair

There is a tantalising whiff of freedom in the air. Yesterday my neutrophils were 0.4 which is 0.1 off the target for discharge. The doctors are happy with my progress and insinuated earlier in the week that as long as everything remains stable at 0.5 I will be discharged. Later today I will find out if I’m 0.5 and going home tonight or if I have to hold out another day or two. I know it’s time to leave because the five minute stroll from the day unit the hostel now takes twenty five minutes due to the fact I bump into patients, relatives, nurses and doctors along the way to stop for a catch up.

The cyclosporine I’m taking is causing a few issues, thankfully nothing unusual and all these side effects can be monitored and / or resolved. My magnesium levels dropped again, which is a common effect, so yesterday I had a drip of magnesium for two hours and now have tablets to take daily. Apparently when I returned to Barts, mid-August, my kidney functions were exemplary but now they are just in the average healthy range, this is another side effect of the drug consequently I received a bag of saline fluid yesterday and have been instructed to drink a minimum of three litres (presumably non-alcoholic) every day.

My treatment continually amazes me, the things they can tell you from your blood and when they analysed samples of my leukaemia to look at the cytogenetics of the cells, it was mind boggling. It’s marvellous what they are able to do as a direct result of the developments in the understanding of the biological science surrounding leukaemia. I have most certainly had an education over the past six months. Back in the 1960s the survival rate for leukaemia was 14% and today it’s 60%. That is a fantastic improvement but as a leukaemia patient that isn’t good enough. I obviously want to be one the survivors and I’ve been unbelievably fortunate to come under the catchment area of a hospital such as Barts, that Anthony Nolan were so swift in finding a perfect match donor all this stands me in good stead but my heart breaks at the thought of those who for whatever reason don’t survive. I can’t say being in the day unit surrounded by blood cancers patients is a laugh, it’s not. That said we do sometimes have a joke, most people even though they are facing terrible issues are upbeat and in good humour. There are 137 blood cancers, if you consider them as a collective group; Blood Cancer, then it’s the third biggest cause of cancer death in the UK, fourteen thousand people a year that is more than breast or prostate cancer.

I’m rather anxious about my wellbeing at the moment as I’m seeing so many fellow patients going through the mill. One who is due to have a transplant has sadly contracted pneumonia, another two at the end of cycles of chemotherapy have recently had to be admitted to hospital and are in isolation due to infections. Their plight demonstrates just how vulnerable we all are after receiving intensive chemotherapy for months. The transplant patients aren’t without their issues. A patient approximately twenty five days ahead of me is suffering acute GvHD (rejection) and is covered in a head to toe rash, I won’t go into detail but it’s not pleasant and the rash could last some time. I most certainly hope the doctors can get it under control without some having to go down some of the more ‘extreme’ routes of treatment. Therefore, I can’t help thinking it’s all going a little too smoothly for me. I’m pleased at how well I feel, that my neutrophils are appearing quickly etc. I was told to prepare myself for a bumpy road, I’ve only been on it for a few weeks, around me I see people having tough times and the truth is I want to do something to prepare myself but there is little I can do because I don’t know what the bumps will be like for me. I’m hoping they are small and infrequent but expecting regular mountains, well, they do say hope for the best and prepare for the worst!!

Hoping for the best, I’m keeping my fingers crossed that tonight I am covered in cat hair after heaps of cuddles with my boy. Fingers crossed.

Fingers crossed for cuddles
Fingers crossed for cuddles

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

Day +15 It’s just my opinion

Yesterday the neutrophils were still at 0.1, I’m hopeful that today they’ll have crept up to 0.2.

Since March I’ve not glance at a newspaper, logged onto the BBC News homepage etc. It can be hard to read about the plight of the world when you yourself are facing a life-threatening problem, not to mention the media rarely reports positive news. This week I bought the paper to bring myself up to speed on Donald Trump’s provocative comments to discoveries at Stonehenge. There is a lot of negative press about the state of the NHS so I thought I’d share my personal option of the care and treatment I have received over the past six months.

In February I had tonsillitis so I dragged myself to the GP surgery, ten days later even though I’d be prescribed a course of antibiotics I still felt unwell so I returned. The GP ordered a blood test to see if there was an underlying problem preventing my recuperation. That evening the GP called me and insisted I return the following day. This triggered a range of blood tests which ultimately led to a bone marrow biopsy. Seventeen working days from the date that I revisited the GP to diagnosis, which I can’t honestly fault considering the number of tests carried out. Obviously to me, the patient, it felt an awfully long time because my health was deteriorating and I knew dire news was looming.

I was diagnosed on the 17th March and instructed to attend an appointment with a consultant at Barts at 9.00 a.m. the following day.

Barts has a team of consultant haematologists. Collectively they make the key decisions with regards a patient’s treatment and each month they rotate the schedule, therefore you encounter most of the consultants at some stage. When I came in on the 18th March, I was talked through my diagnosis, the treatment plan and had every opportunity to ask questions. At no point was there any pressure to wrap up the meeting even though the waiting room was jam-packed with patients. Whilst in with the consultant I was their number one priority. All the consultants here have been friendly, supportive and most importantly, honest.

At the same time as meeting the consultant I was assigned a Clinical Nurse Specialist (CNS) and she has continued to be my contact throughout my treatment. Her role is to inform me of things I need to do, what I can’t do, book tests, touch base with me twice a week to see how I am managing etc. Truthfully she has been much more than a ‘facilitator’ who also gives me a rule book of do and don’ts. She has given me a much needed hug in some of my darkest moments, shared in my joy when a donor was discovered etc. Frankly she has been a rock.

The nurses on the wards and the day unit have been superb. When someone is stabbing you with needles etc. you need to trust they are competent. I’ve not met one nurse in Barts who at any point has given me cause to ask myself ‘do they know what they are doing?’ They appreciate it’s a worrisome time for the patient, that some procedures are ghastly and therefore they make every effort so you feel at easy. The friendliness, warmth and support they give on top of the nursing duties makes the horrors of treatment more tolerable.

Maybe because they heard I talk to my cat…. I was offered the support of a psychologist. Chatting to the psychologist was beneficial as friends and family can’t always handle the truth of how you feel, talking to an outsider who doesn’t judge can be therapeutic. The psychologist doesn’t just listen to your woes they also inform the medical team of any concerns you may have and advise them accordingly.

Let’s not forget the laboratory staff, every day I have blood tests which are turned around on average within a few hours. My initial leukaemia samples were sent to labs across the country to be tested for chromosomal defects and these tests take weeks.

All the above including the vast amounts of drugs which have been administered to me costs more money than I will probably ever pay in national insurance subscriptions. I won’t lie the NHS is far from flawless, I heard from one patient of terrible mistakes made at another hospital which have resulted in them being on dialysis for the rest of their life. It’s very easy to allow one or two negative events over shadow the quotidian event of successful treatment of a vast number of patients.

I read about the Syrian refugees who have no shelter, water, sanitation, food or medical assistance. I am exceptionally grateful I am to reside in a country able to provide me free healthcare when there are people elsewhere risking their lives for basics such as food and water.

It is health that is the real wealth and not pieces of gold and silver – Mahatma Gandhi

I’ll get off my soap box to go do some mindfulness colouring.

An attempt at mindfulness
An attempt at mindfulness

Please take a look at the attached link and consider signing the petition regards the recent withdrawal of life-saving drugs for cancer patients.

https://you.38degrees.org.uk/petitions/black-day-for-uk-blood-cancer-patients?bucket=&source=twitter-share-button

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

Day +13 Hazzah!!!!

Hazzah!! Today my blood report confirmed that I have neutrophils, glorious magnificent neutrophils, admittedly only 0.1 but that is better than 0.0. This is wonderful news for a number of reasons.

  1. Walking around with 0.0 neutrophils leaves a person incredibly vulnerable to infection and should they get an infection there is no immunity to fight. (It does help when they manage to stab themselves with a plastic Pret knife!)
  2. At 0.5 I can be discharged and knowing this time I’ll be going home to commence rebuilding my life is a marvellous thought.
  3. Possibly most importantly, the neutrophils are probably created by Superman’s cells, the logic behind that is that after four cycles of intensive chemotherapy my cells are well and truly beaten and battered so they will take considerably longer to produce neutrophils.
Glorious, glorious neutrophils
Glorious, glorious neutrophils

At day +30 a chimera test will assess how much of my blood is Superman v me, then again at days +60 and +90. Superman won’t immediately take over all my bone marrow there will be a conflict during this time.

I’m not entirely surprised to hear I have neutrophils as I have experienced some bone pain recently. Cycle 1 I was given a growth factor, G-CSF, which makes the bone marrow produce blood cells. Combined with the fact that my body was pretty keen to produce blood cells meant I was overly stimulated. I doubt I will ever forget the night I clung to the bed frame, knuckles white and in an extraordinary amount of pain I could hardly breathe as a result of the G-CSF. It did the trick my neutrophils rocketed, overnight, however decision was made not to give administer this to me due to level of pain I was in. Bone pain is an odd sensation because it actually does feel as if the pain is coming from within the bone. The areas which mainly hurt are the hip bones and the lower back. Cycle 2 my bone marrow naturally created blood fairly quickly, I suffered slight bone pain but it was tolerable twinges. Cycle 3 my bone marrow was knackered, I had to wait a long time to feel the tell-tale twinges and the blood results to confirm recovery.

Treatment for leukaemia has been a reflection of life, in many ways. The things you expect to trip you up, often aren’t as bad as you anticipate but out of nowhere the unexpected has you stumbling around. The night I had bone pain, I was in agony and as it’s a rare response no one had warned me. I recall thinking ‘what the hell is happening to me, NOW?’ I was genuinely quite disturbed. After I came round from having my Hickman line inserted, I felt as if I’d been in an accident my chest was exceedingly sore for days, that really challenged my spirits probably not helped by the fact the line grossed me out. Another night I had a fever and the doctor wanted to take blood from my arm, which I’ve never been comfortable with. I worked myself up into quite a hysterical wreck because by this point I’d become accustomed to blood being taken from my line and for some reason I just couldn’t take on board this news. (They wanted to take blood out of my arm as it is a fresh source and should my Hickman be the cause of an infection they would have a ‘clean’ sample to compare) Its incidents such as these I’ve found the hardest to take in my stride, chemotherapy no real issues and yet I was petrified at the thought of having chemo.

I’m ecstatic!!! I’m a step closer to living a long life and more imminently cuddles with my boy. I’m off now to go dream of the celebratory glass of vino or three.

A step closer to the master plan for being a rebel OAP
A step closer to the master plan for being a rebel OAP

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

Day +11 Green light for a spa day

I read an interesting article the other day on how relaxation techniques could improve psychological wellbeing post a stem cell transplant. Evidence suggests that people who used relaxation techniques appeared to have lower levels of anxiety, depression, fatigue and pain. When combined with exercise, the same techniques also seemed to improve their physical health.

I was under no illusion that post SCT I would be able to return to my pre SCT, frenetic lifestyle so much so that I drew up a ‘recovery plan’ to ensure I allow myself the opportunity to rest daily and make sure my weekends aren’t busy because fatigue is a known issue post SCT. At the same time, I’m eager to exercise so the article cheered me up no end; it advocates exercise when combined with relaxing. Relaxation is not my forte, I know I’m my worst enemy, in the past I’ve tried meditation and I’m shockingly bad at it. Distracting thoughts do not float away like clouds instead they turn into list of chores! As for breathing deeply, I’ve also tried that and it turns out I have a tendency to hold my breath or mess up the breathing rhythm, as soon as I try to concentrate on my breathing. I suspect all the methods which require focus aren’t for me; I’ve come up with a few options which may well work for me such as listening to soothing music, exercise and massage / pampering. Now all I have to do is make sure I incorporate these into my daily routine, once I’m discharged so much so that relaxation becomes a habit.

Mindfulness colouring the new buzz relaxation method. may as well give it a go
Mindfulness colouring the new buzz relaxation method. May as well give it a go

Strangely enough before I read the article, I was day dreaming about how lovely a pamper session would be because being in hospital doesn’t make a person feel at ease and it certainly doesn’t make me, personally, feel very physically refreshed. In fact, I feel a bit of an old hag at times! I’ve put weight on, I’m not allowed to shave (due to low platelets, there is a risk of excess bleeding and the fact that any nicks could be a potential cause of infection) and my hair is starting to grow back however it looks very much like a convent haircut. I was conjuring up catalogue of things I wanted to get done upon discharge starting with a facial, then some waxing, maybe I’d get nails done and without doubt my convent cut converted into something resembling a style. Now, I have the green light because all of those things will be calming especially if I have soothing music on!!!

I’ve gained weight, which is not what I imagined would happen when I was diagnosed. In fact I had visions of being rake thin but it turns out oncology doctors like a bit of excess weight because it gives the patient additional reserves should they succumb to an infection or if the chemo does make them particularly unwell. Chemo didn’t make me feel sick, thanks to the anti-sickness drugs and although it did mess up my taste buds, that just meant I wanted different food and drink, often craving more sugar or fat rich foods. On a daily basis the doctor asks if you are eating, what you’re eating etc. and on the ward the nurses keep an eye on you, as a result, I’m 5kg heavier and not very happy about it. I’d already asked the doctors about returning to exercise and the article back up my cause. Weight is mostly about diet though; therefore I’m going to have to start to ween myself of my new found addiction to sugar! Prior to being unwell, I had a healthy balance between love of food, eating healthily and exercise. I didn’t anticipate having to battle the bulge post treatment; I think it’s a good excuse to think twice about what I eat to guarantee that when I eat or drink I’m nourishing my body.

You may well recall there was reason to believe I’d potentially been exposed to the chicken pox virus, my medical team consulted with a virologist earlier in the week and collectively made the decision for me to be vaccinated. Two large, fats needles into the gluteus maximus needless to say I had two rather sore buttocks for a day or two. I was genuinely impressed at how seriously they took the threat of chicken pox, even if it did mean pain for me.

Otherwise I’m pleased to report it’s been a quiet week, medically. I’m still popping around twenty pills a day and as expected I don’t have any neutrophils, thankfully my general wellbeing is good. I just need to remain infection free whilst I wait for the neutrophils to be produced, most likely by Superman’s donation.

I’m rattling through my entertainment programme a little too well! Game of Thrones Season 5, True Blood season 4, 5, 6 & 7, True Detective Season 1 all done and dusted, my jigsaw puzzle complete, a book finished….hurry up and appear neutrophils before I’ve nothing to do / watch!!!

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

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