Looking back

I’m back at Hammersmith tomorrow for my one year post transplant check-up. Yep, one year….almost! Lena and I have spent a fair bit of time over the last few weeks looking back at where we were this time last year, reminiscing about the great unknowns that stood before us at that time.

At the beginning of December 2012 I spent my first few days in one of the isolation rooms up at Hammersmith, bringing home to me just how vulnerable I was going to be during my transplant. I had my Hickman line inserted and started the whole process of mobilising my stem cells ready for collection. Then it was the 10 days of self-administered growth hormones, injecting myself for the first time. Never been one to watch the needle go in, so that came with its own set of challenges.

Tomorrow marks precisely one year since my stem cell collection. As I said at the time, that turned out to be a massive tick in the box, making all the associated bone pain well worthwhile. Since that day, my cells have been cryogenically frozen in liquid nitrogen, warmed up in a nice bath and then fed back into the poor sod that gave them away in the first place. Most importantly, as of 31^st January 2013, they started growing healthy bone marrow and producing new blood cells.

How life moves on. From a difficult beginning I’m now back at work pretty much full time and cycling around Richmond Park in the evenings….I say cycling, Marcus does that, I just huff and puff, whinging about my lack of breath and general fitness! As a family we’ve done more things in the second part of this year, rather than saying we should. It all culminated a few weeks ago in a dining experience up at Heston Blumenthal’s ‘Dinner’ restaurant at the Mandarin Oriental Hotel in London. Admittedly, a delayed Christmas present from last year, but what an experience it proved to be. Fortunately, one of our good friends happened to know the GM up there very well, and was willing to put in a good word for the Hoban’s. I’m sure it would have been a fantastic evening anyway, but Paul went out of his way to make the occasion truly unforgettable. We even got to sample Heston’s liquid nitrogen ice cream trolley….no stem cells this time, just natural yogurt, cream, eggs, gloves, goggles and …errr…liquid nitrogen!!

 

 

From a health perspective, everything is stable, which is what we like. I had my last set of blood results a couple of weeks ago and my paraprotein level remained at 9. I’m still having my monthly Zometa infusion, and I’ll continue with that until at least the middle of next year. Next paraprotein level check is due mid-January, when I’m expecting my consultant to give me the good news that a one year post transplant bone marrow biopsy is needed…..something to look forward to early in the New Year.

As for Christmas, well, this year is going to be a more social affair, now I’m allowed to mix with the great unwashed…well…family. Last year was great with just the three of us, actually quite relaxing…the calm before the storm. This year it’s going to be fantastic to spend Christmas with all the family, but with a two year old nephew and four year old niece on the scene, I’m expecting a storm…..at approx. 5am Christmas morning. Joy!!

 

 

 

Summer Time and the Living is Easy...

Well, I've finally decided that it's time for another exciting instalment of 'The Life and Times of Patrick J Hoban'. It's been over two months since my last post and a fair bit's been going on over the summer......we've even had a new roof put on the house....how wild is that!!

I'll start off with the most important stuff, and that's the health update. It's been good news from a physical perspective, with my last two blood tests showing my paraprotein levels stable at 10, give or take. All my other blood counts are now back to pre-shingles levels, with my neutrophils level a respectable 2.4, WBC 4.4 and HB 135. All a bit low for normal folk, but considered good value for us myeloma addicts!!

I continue to work part time, with Wednesdays off to break up the week. From a physical perspective I'm coping well, but still remain wary of what happened at the end of May. As I probably said at the time, things felt perfectly fine one minute and the next I'm back in isolation for a week hooked up to an IV drip. I need that little surprise again like a hole in the head!!

From a psychological/emotional perspective I have to be honest and say that things have taken a bit of a dive over the past few months. I've taken a hit confidence wise, which feels more acute in the work environment. I seem to have this unhealthy habit of comparing my performance now with how I felt prior to having seven months off for my transplant. The funny thing is, there's absolutely no pressure or expectation being set by the company, and I appreciate that so much. This feeling is all self inflicted, but saying that, it's a feeling that's there. I need to accept and understand that I've been through a significant change in my life and it's going to take time for things to settle down and for my confidence to re-establish. I mustn't just push what I've been through to the back of my mind and hope to carry on regardless. Annoyingly I can't even blame this on someone else's DNA.....I had my own cells put back in.....damn!!

In addition to the fall in confidence, my ability to focus has also been blurred by the myriad of thoughts running through my head. These have centred around ensuring my diagnosis and treatment have a positive impact on my outlook and the way I live my life. I suppose it's that classic reassessment of my values. I think I'm just frightened of returning to my pre-diagnosis 'normal' lifestyle. Amazing really. I've been craving a return to normality since my treatment began, but now I just don't want my life, and especially my family life, to gradually drift back to where it was a year last April. That's not to say that things back then were particularly bad, it's just that since then my perspective on life has changed. I don't want to be in a position of relapsing at some point in the future, then looking back and thinking, I'm the same person doing the same things I did before my diagnosis. I'm not talking about wholesale changes, perhaps just little tweaks in my life. It's difficult to explain really. This diagnosis has forced my hand into understanding what's truly important in life....faith, feelings, family, friends, wellbeing and San Miguel!! Other things perhaps just aren't as important any longer.

One thing is for sure. I need to give myself the time to re-adjust, and not be too impatient or hard on myself. I am only eight months out of a stem cell transplant, a fact that seems all too easy for me to forget.

Anyway, moving on to holidays, this summer has been somewhat more fruitful than last. Two family holidays including a trip to France and Sweden, finished off with a boys golfing weekend in Turkey. Oh, and Marcus even managed to squeeze in a weeks motorsport and adventure holiday with a mate of his. All great trips....we even had pretty much continuous sun and warm temperatures in Sweden, a minor miracle in itself.... This time around we rented our own cottage on the coast, just south of Gothenburg. Staying with family is great, but it was relaxing for the three of us to have our own space and be able to invite our respect in laws over to 'our place'. Rather than dribble on, I've included a few pictures of the highlights below.

 

 

The little pad in France

 

See, real sun....in Sweden!!

 

There was no room for Marcus on the boat, so we had to drag him behind!

 

Perfect summer photo apart from the weirdo in the foreground!

 



 

Our attempt at a little YMCA on the pontoon!

 



 

Ahhhhh......San Miguel

 

 

 

 

Our room with a view in Turkey

 

 

Anyway, I know I've been a bit slack on keeping you updated with events over the summer, so I'll try and post a blog at least once a month from now on, I bet that makes you happy ;-)

Race for Life

Well, my on going 'allergy' to suncream has really come into it's own over the last week or so. Basting myself with Clover (even though it is lovingly made with buttermilk) just doesn't appeal, so it's long sleeved shirts and a rimmed hat for me for the time being!!

Saying that, things are all good with family Hoban at the moment. Marcus took part in the Race for Life run by his school a couple of weeks ago. He came 4th in the 5k race (out of just over 100 runners) in an amazing time of 18 mins 45 secs, and in doing so raised some funds for a very worthy cause (as well as beating a teacher in the final sprint finish). Hopefully he also drew some attention with his bright orange MyelomaUK t-shirt. I actually found it quite moving when I saw what he'd written on his race bib.

Anyway, as the supportive parent I am, I couldn't hang around to watch Marcus sweat it out on the recreation fields of Teddington school...left that to Len!! I had a boys weekend relaxing on the canals of Warwickshire with my brother and friends planned. We hadn't all met up for a number of years, so it was great to catch up with the guys....all still looking so young...as if they'd just left university....unbelievable!! Well, it was certainly a relaxing weekend, plenty of experienced long boat captains on hand to confidently guide us through the myriad of locks, which seemed to pop up all too frequently. Guess that goes hand in hand with building a canal on a hill....who's bloody stupid idea was that!! I had a fantastic couple of days and even managed to recover from the trauma of having all the locals (including the barmaid) laugh at me for ordering a pint of lager shandy at the first pub we stopped in. My follow up order of half a lager shandy was even less well received....real ale country up in those parts!!

So, what else is new. Well, I'm settling into work more now. It's taken a bit of time to get used to the whole idea, having had seven months off post transplant. My body is starting to adapt and I'm less tired now when I get back from work than I was for the first few weeks. I must say, both British Airways and my work colleagues have been really supportive and patient the whole time. It's made my treatment a lot easier to deal with and enabled me to focus on my health rather than worrying about other issues. For that I am eternally grateful!!

Health wise I'm now back at Kingston hospital for on going blood tests and monitoring. I'm feeling well and certainly starting to sleep better and feel more 'normal' in myself. The skin itchiness has almost gone as well, so life is far more comfortable. With my increasing strength has come an improving social life, and it's been great to get out more and meet up with friends and family. It all helps to bring back some much needed normality to family life.....that's if you can classify our friends and family as normal!! I'm not saying a word.

Took this shot when some deer invaded the green

 whilst I was attempting some much needed chipping practice.

More than makes up for the dodgy golf!!

Back to Work

Time to bring you up to date with 'wotz been happnin' over the past few weeks, since I received my biopsy results.Well, I had my 'final' consultation up at Hammersmith a couple of weeks ago. I say final, but I still ultimately remain under their supervision and will be back up there for my one year post transplant review in January. Until then all ongoing blood tests etc will be done under the care of my haematologist at Kingston hospital.

As for the consultation, we discussed the biopsy and PET scan results and the options available to me moving forward. There were only really two, either to start with a 'maintenance' therapy or to follow a more passive watch and wait policy. Given my current blood results and the fact that I have a good quality of life (even though I haven't won the lottery yet) Len, myself and the consultant all agreed that a more passive stance would better suit my current situation.

Maintenance therapy has its own side effects, which would definitely have a negative impact, whether large or small, on my lifestyle. It would mean taking a low dosage of either Thalidomide or Revlimid, the only two remaining drugs (I've already had a course of Velcade) currently approved in the UK for the treatment of multiple myeloma. Using them as a maintenance drug would potentially mean they could not be used when (yes, when) I relapse....unfortunately your body eventually becomes somewhat immune to the effects of each of these drugs. Another consideration is that there is currently no scientific evidence to confirm whether taking a maintenance drug prelongs remission.

Anyway, decision made, I'm taking the monitor route for the time being. I'll continue to have monthly blood tests for a period of time until I eventually move to needles every three months, a necessity to ensure my blood counts remain stable and most importantly, to keep a close eye on my paraprotein levels, the indicator of how active my disease is.

So, what else is new? Well, yesterday was my first day back at work since the end of November. Weird....like your first day back at school after summer holidays....not that I've done that for a while!! It was strange to meet up with colleagues that I'd only had contact with via Skype for such a long time....even walking into the building felt a tad surreal.  Tiring as well. I was only in for half a day, but still needed to rest in bed for a couple of hours when I got back home.....maybe that's just an age thing!! Anyway, as my consultant has said, I need to take things easy to begin with....he doesn't want to see me back in hospital with shingles again. It's funny, my head is telling me I'm fine, but it's going to take a good year before my body catches up with the idea.

Anyway, just to finish with, I have been thinking a lot recently about the amount of love and positive vibes I've received from all my close friends, relatives and family since my diagnosis this time last year. I'm amazed by the support you've all shown and the patience and understanding my wife and son have given me. Even now as I write this I'm starting to cry and I really can't put into words just how much you've all meant to me and helped me through this difficult time....even though you never clubbed together to buy me that one million pound Koenigsegg...you're forgiven!!

3-4%

I'm going to make it brief. I've just received some fantastic news.....my 100 day post transplant bone marrow biopsy showed only 3-4% plasma cells (malignancy). As a quick reminder, that's down from 25% at diagnosis and 10% pre transplant. Lots of tears (of joy and relief) and you can be assured that Len and I will be cracking open the Champagne tonight!!

Back Home Again

Back at home again, after five days in the big H. The blisters on my back had started to heal, so I was sent packing on Thursday evening. I'm still on high dose anti viral tablets for the next week, by which time hopefully the blisters will have fully scabbed over (hope you're not eating whilst reading this!!). The right side of my torso is still very sensitive and a little painful at times, but there have been no new outbursts of blisters and the doctors have said I was lucky to catch it early and start treatment so soon.

As far as my biopsy results are concerned, still no news from the pathologists lab...will hopefully hear something next week. I'm starting to get impatient,  it's been over three weeks since the biopsy and I usually get the results after a week and a half. Anyway, for the time being I will live off the positive results from my PET scan. It showed no new tumour sites and confirmed the plasmacytoma on my sternum has dramatically reduced...some great news!!

So, getting back to the shingles...as I said previously,  I'll take it as a 'gentle reminder' from my body that I am still only four months out from a stem cell transplant. Out I go to cut the grass then!!

The Return of the Chicken Pox

Well, just when I thought there was nothing of interest to tell you, other than my new crop of 'baby down' soft hair, and me becoming the family lap dog of choice as a result, it all kicks off.

I popped into town with Marcus yesterday morning to buy him a new pair of astro turfs from everyones favourite shop, Sports Direct, and all seemed fine. Got back home and asked Len to look at what I thought might be a scratch or a bit of post teenage acne on my back. She found a clump of blisters, which obviously set alarm bells ringing, so after a chat with the on-call haematologist at Hammersmith, she decided I needed to get to A&E. So, after spending what felt like seven hours (oh, hang on, it was seven hours) at Hammersmith A&E yesterday, I was admitted to hospital with shingles. I'm now back in the same isolation ward where I had my transplant, and on an antiviral IV. They're obviously very keen to get on top of it quickly, as I'm still very much immune deficient only being four months post transplant. I'm in good hands and could be here for a week or so, depending on how well I respond to the drugs. Hopefully we've caught it fairly early, which helps alot with the treatment of shingles. What triggered it.....who knows....just pushing things a little too hard at this stage perhaps. It's frustrating, my head's telling me I'm fine and can return to a normal lifestyle.....maybe this is my body just telling me to calm it a little. As a good mate said, make like the rabbit in the Cadburys caramel advert... just take it easy!

Anyway, just to top off what was a thoroughly shite day, what more could one wish for other than a parking ticket......I am living that dream baby.....well, living the dream minus £50 anyway!!

Last Thursday

Last Thursday....not a day that sneaks its way into my top 10 days of all time. I had my three months post transplant bone marrow biopsy in the afternoon. Obviously, if I could share that experience with you I would.....I'm thoughtful like that!! I've got an appointment with my consultant on Tuesday 14th May, so will get the results and be told whether I require any follow up 'maintenance' treatment at that time.

As I said earlier, not the best of days last Thursday. I received my paraprotein results in the morning from my last set of blood tests taken on 23rd April. The paraprotein is a good indicator of the level of disease, and mine has gone from 13 pre transplant to 9. I was expecting a bigger drop....not based on any facts, just the hope that the paraprotein would have reduced by at least 50%. I was really upset and worked up.....I've gone through all this...for what? I don't know....maybe I'm too positive at times and I just set myself up for a big fall. I don't know.

What proved to be good in the end (just as Len had told me) was the fact that I could talk to my haematologist about the blood results prior to my biopsy. He's a very positive and approachable guy and really helped put my mind at ease. As he said, the key with this disease is stability, not absolute values. Having a stable plateau moving forward is what we need, even if that level is 9. My calcium levels are fine, kidney function good and my sole plasmacytoma (tumour) has significantly reduced....all positive signs that need to be taken into account. So, not the best blood results, but lets wait and see what the bone marrow results are like, and as my consultant says, I just need to get back to living a more normal life. San Miguel and a few rounds of golf it is then!!

Sunscreen

Well, after nearly two months as the proud owner of a third nipple, it was finally removed yesterday. If the truth be known, the Spider Sisters never did get back to me reference my offer to join them, so things weren't looking particularly good for a new career on the stage anyway!!

It turned out to be another positive NHS experience,  in all its administrative glory. Arrived at Hammersmith for the minor operation at 07:30 (the procedure was planned for 08:00), the cuff (aka third nipple) was eventually taken out at 16:30. Eight hours of waiting around in a hospital full of sick people when you've got a weakened immune sysytem....just what the doctor ordered!!

Anyway, it's out now, so I'm really just waiting for the bone marrow biopsy, which will probably take place at the end of next week or beginning of the following. This aligns with 'day 100', which is typically when my paraprotein level will be at its lowest post transplant, so should give a true picture of how successful the transplant has been. The results generally take around a week, so I should know the score around the beginning of May, at which point my consultants will be making a decision on future treatment.

As an aside, I've made an interesting discovery over the past weeks. Having been invited around to some good friends a few weekends ago (my first 'post transplant' social), we decided to have a drink out on their terrace,  taking in the first evening sun of the year. I hadn't put any sunscreen on, but after half an hour, decided to slap a bit on knowing my post chemo skin would be very sensitive. The following morning my face was completely red, itchy and puffed up around my eyes. I assumed I'd got burnt during my brief exposure to the 'fierce' early April sun the previous night. However, last weekend I went to watch Marcus play football, and seeing as it was partly sunny out, put on some factor 50 and wore a hat to further protect my face. I was only outside for a little while but sure enough the following morning my face was a mess....yep....even more than usual!! Anyway, to cut a long story short, after several 'experiments' it appears my skin is far more sensitive to sunscreen than it is to the sun! Could make life interesting later in the year, though hopefully by then I'll have hardened up a bit.

Other than that, my blood results remain fairly stable, I'm getting stronger and fitter as the weeks pass and my hair continues to grow....though apparently not at the rate required to avoid the 'wig cap' that Len and Marcus kindly purchased for my 46th birthday last week. How thoughtful!!

 

Moisturising

Well, it's been just over two weeks since my last update.....doesn't time fly when you're having fun!! I was up at Hammersmith last Tuesday for blood tests and a review with my consultant. Bloods are heading in the right direction and in some cases, though still low, are within the 'normal' range:

WBC 5.9 (normal range 4.2 to 11.2)
RBC 3.4 (4.2 to 5.3)
Neutrophils 3 (2 to 7.1)
Platelets 206 (130 to 370)
Hb 11.7 (13 to 16.8)

In fact my consultant is no longer 'concerned' about my blood counts and is now focusing on my paraprotein level. As I've previously said, the real success of the transplant won't be known until I get the results of my next bone marrow biopsy, three months post transplant....so around mid April. That's getting closer and my mind is definitely starting to shift its focus from 'post transplant recovery mode' to 'how successful has this transplant really been mode'...and unfortunately this does at times bring negative thoughts to the surface. I do try and keep positive, but inevitably the shield does slip sometimes.

So, what else is new? Well, still on the medicals, I've started my new course of antibiotics. No allergic reaction, which is good news as I'll be on these for the rest of my life. They're supposed to slow down the spread of any infection, should I get one, as apparently the spleen is damaged during the transplant, and part of the spleens normal function is to help fight infection. The itchy skin continues and boy am I getting fed up with having to moisturise my entire body twice a day. According to my consultant, this is likely to continue for a while as the high dose chemotherapy attacked the skin as well as my bone marrow.

On the plus side, my hair has started to grow back over the past few weeks, though it's weird seeing dark Professor Robert Winston like eyebrows sprouting, since I'm used to being blond. Unfortunately the new body hair hasn't aided the moisturising process either!!

My taste has pretty much returned to normal now (I can finally savour a beer) and despite the fact I'm still not allowed takeaways, I've put on more weight....not back to my full fighting weight, but getting there. My energy levels and overall fitness are also improving as my red blood cell count picks up. All good stuff, but the consultant has advised me to steer clear of pubs, restaurants, public transport.... in fact anywhere where I'd mix with lots of people, until at least three months post transplant.

Marcus and I have also been busying ourselves building a radio controlled off road car over the past few weeks. We took it out for its maiden voyage yesterday down at the park... great fun...pretty damn quick as its got a fairly powerful fuel engine.

Anyway, I'll leave it at that for now. As you've probably noticed, I've started to reduce the number of blogs I write. Whilst things are stable I'll probably only update it every few weeks, but I promise, should anything interesting happen, like I get pregnant, my third nipple gets removed or get some significant news on my progress, I'll keep you all updated!

Another week

Another week slips by and though my skin remains sensitive and itchy, things have really improved over the past few days. The itching is more of an occasional annoyance now, like having flees, rather than torture! My face has fully returned to its former glory and I'm sleeping at night, be it still with the aid of sleeping tablets.

My blood results on Wednesday were pretty much unchanged from the previous weeks, but in myself I'm feeling much stronger. I've even been out on my bike in Richmond park, which considering where I was just a few weeks ago, feels like a huge step forward. I've also now moved to fortnightly reviews with my consultant, so I'm not due back at Hammersmith until 12th March.

So, everything is still moving in the right direction. I even had my first foreign bodies (visitors) in the house this weekend...my parents popped in together with my brother, who came over from Sweden for a flying visit....great to see them all....no adverse health reactions so far!!

An itchy few weeks....

Apologies for the lack of an update recently, but to be honest it's been the last thing on my mind for the last 12 days. In fact the past few weeks have been one painful, itchy, sleepless blur. A couple of weeks agoe put on a specific antibiotic to try and get rid of the abscess under my arm. Unfortunately I had an allergic reaction to this antibiotic, resulting in a rash which quickly covered my face and neck. It felt like severe sunburn and looked as though I'd spent way too much time under a high intensity sunbed. After a few days my face then started to swell up and my eyes closed as a result....a very handsome young man indeed!! In addition to the face I also started to get small blisters on my upper torso....not so painful, but extremely itchy. All this meant no sleep, which of course just added to the frustration. The swelling continued to get worse last weekend, so I was advised to go to A&E. Three hours later we returned home with more anti histamine tablets, but nothing else. A&E didn't want to prescribe any steriod based creams due to the effect it could have on my immune system, so all the time my breathing was unaffected, I'd basically just have to man up and grin and bear it....just what I wanted to hear!! Relief finally arrived last Wednesday when my consultant did prescribe some steriod based creams for both body and face. Having used them for the last two days, my face has calmed significantly, however my body (which they think is folliculitis) remains quite spotty and still very itchy. I've also been prescribed sleeping tablets, so I've finally been able to get some shut eye. After a nightmarish two weeks, I'm finally starting to feel normal again.

I've also been back to Hammersmith twice since my last update for more immunoglobulin (antibodies) and my pentamidine nebulizer (for pneumonia). Most importantly for now, my blood counts are improving, so for the medics and vampires amongst you, here are the readings:

14th Feb; WBC 4.6, neutrophils 2.0, Hb 9.8, platelets 176
20th Feb; WBC 6.1, neutrophils 2.2, Hb 11.4, platelets 232

As I think I've previously mentioned, the improving blood counts are great news, it indicates that my stem cells are growing well. What it doesn't show however is the impact the transplant has had on my cancer. I'll only know this in two months time, when I have a bone marrow biopsy.

Fortunately my platelet count of 176 on 14th Feb meant that I could have my Hickman line removed. I would describe it as a painless, but fairly brutal process. My image of a doctor putting two feet on the side of the bed and tugging with all his might was actually not far from the truth. There was none of this 'we'll give a gentle pull and if the line doesn't come loose we'll need to cut the cuff out first'. The cuff by the way is a kevlar disc just under the skin onto which your skin grows to hold the line in place. This 'baby' was coming out whatever....even if it meant half my internal organs coming out with it. Two hard tugs later and the line was out....unfortunately minus the cuff. This decided to stay inside my body, which now makes me the proud owner of a third nipple!!! Though this does potentially open up a whole new career, to be honest I'm not a great fan of having bits just left in my body, so my consultant has promised to cut it out once my skin condition is under control.

So, all in all, the past two weeks have not been the most pleasant experience...very tiring and very frustrating to say the least. Still, I have come out of it all with a third nipple, and there's not too many people in the world that can say that!!!

Hickman line

Well, much as I thought, the last few days have been a series of ups and downs. Some days I feel that my energy is gradually returning and I can exercise or go for a short walk, the next I need to sleep most of the time. The abscess under my arm is improving with the antibiotics and my mouth ulcers have gone, so all is heading in the right direction. My appetite is even starting to return, though I think in the end my hatred of hospital food was more a mental block (having been encouraged to eat it immediately after the chemo, even when I was feeling very nauseous).

I had my first follow up visit to Hammersmith on Wednesday and for the medics amongst you, my blood counts were; WBC 2.2, Neutrophils 1.2, Hb 9.5, Platelets 46. My white blood cell and neutrophil counts have dropped since leaving hospital, but again that was fully expected as the growth hormones I was taking were a stimulant and raise these counts to artificial levels, which aren't sustainable in the short term. The expectation is that all my blood counts will improve from now on....next follow up visit is this Thursday,  so all will be revealed then.

They also decided to leave my Hickman line in for another week, as my platelet (blood clotting cells) count was too low. Annoying, but I guess they didn't want to have to make that embarrassing phone call; "well Mrs Hoban, the good news is your husband was in remission from his cancer.....the bad news, he bled to death when we removed his Hickman line". Anyway, my hope is that my platelet count will be high enough this Thursday for them to remove the line.....it's been a great friend for over two months, but I'm getting a little bored with it now.

So, things are moving forward gradually, but patience will be the name of the game over the next few months!!

Settling in

Day two of being home and I'm starting to settle back into family life. The final leg of my journey back to recovery has began and even over the last few days it's become much more real just how long this recuperation period will take. Yesterday I was probably working off adrenalin....today the reality check. I went for a 20 minute walk outside to get some 'fresh' air, as I did yesterday, but felt absolutely drained when I returned home. I've been for a lie down for a couple of hours, but even now feel very lethargic and tired. It's funny how the isolation room almost disguises just what a lack of energy you actually have. I did do some exercise whilst in the room, but you invariably spend most of your time sitting or laying in bed. At home I'm up and about, only really pottering (like the old man I am), but even that wears you out quite quickly. Even the background sickly feeling has returned, so I'm back on the anti nausea tablets to ensure it's kept under control. It's all going to take time, l knew that...three to six months is typical, to get back to somewhere near my pre-transplant condition levels. Saying that, I've got 86 episodes of The Sopranos to get through....that should take me into April!!

Anyway, being back home is just wonderful...not only familiar surroundings, but also the fact that the medical part of the transplant is over, and at least up until now, has been a real success. I'm back at Hammersmith tomorrow for blood tests and to see my consultant.  We're not really going to know just how successful my treatment has been until my next bone marrow biopsy,  which is likely to be in three months time. Until that time the hope is that my blood counts continue to rise and that I don't pick up any infections or viruses. I'm also having the Hickman line out tomorrow.  I'm a little apprehensive just to experience what was meant by "we just give it a little tug and hopefully it will come free". I'm hoping the pictures I have in my mind of me bracing myself and the doctor giving a mighty heave with both feet against the side of the bed do not become a reality. I'm sure it's going to be slightly more clinical than that.

So, I'm back home and settling in....and I have my lovely family back for support.

Home sweet home.....

We have lift off

The FANTASTIC news we've been waiting for, my stem cells have successfully engraft, and my neutrophil count is up to 0.5. It's very likely the count will continue to rise, and I'll soon be out of isolation....yippppie!! How great does that feel...Len and I both had tears in our eyes!!

.........and just when I thought I'd seen it all, along comes synthetic saliva...in an aerosol can. I've still got a dry mouth due to the chemo, and this has been offered to me as the solution to all my woes. You spray it directly into your mouth. It is literally like having someone spit on your tongue!! I've got natural flavour (whatever that means), but it does apparently come in 'bronchitis' and 'pneumonia' flavours for a special treat!!

You know what, who cares, MY STEM CELLS HAVE ENGRAFT!!!!!!!

Ups and Downs

There's been plenty of ups and downs over the last few days. On Sunday Marcus and Len came up to visit, which gave me a real lift. We even went for a walk outside (me with my wacko jacko face mask on), the first fresh air I've experienced for two weeks....well, as fresh as it can be in Hammersmith!!

Yesterday was not a good day. I didn't sleep well the previous night and just felt tired and ill all day. I also had a temperature spike, so the doctor started me on IV antibiotics....they're not prepared to wait and take any risk of infection at this stage, and rightly so. My platelet count had dropped to 11, so I also ended up having a platelet transfusion.

Today has been much better, my temperature is almost back to normal, platelets are now 46 and I'm feeling brighter. Even the ulcers in my mouth seem to be improving. The only minor blot on the landscape is a painful skin infection I've got under my armpit. The doctors aren't unduly worried by it and hopefully the antiseptic cream I've been given will clear it over the next few days.

So, another day ticked off, another day closer to waving goodbye to hospital food!!

Measure of a Gentleman

Day 9 and feeling better today than I have for the past 2 days. The diarrhea has continued with the added bonus of mouth ulcers thrown into the mix. With my blood counts at rock bottom, my energy levels are also very low. That said, even though my white blood cell count remains at zero, I've maintained a good Hb of 10.6, which has meant no transfusions up till now. The biggest 'surprise' and a real plus for me so far is that I haven't picked up a fever or any kind of infection, which has meant no antibiotics. So, all being well, I start on the growth hormone injections tomorrow, which should kick start my cell production and ultimately lift my blood counts. Another plus for my transplant was the number of stem cells put back in on Day zero. They collected four bags of cells before Christmas, each containing five million stem cells. They say you need around two million cells for a successful transplant, so with more than double that fed back in (the remaining three bags have been frozen to support future transplants), I've got to be confident of a positive cell engraftment.

Anyway, enough of the medical stuff, over the last few days I've also decided on the true measure of a gentleman, and that based on that measure, I'm a true gent....a real catch!! So, over the last three days I've had to provide a stool (as in poo) sample to make sure I haven't got an infection. For the sample I was given a bed pan, sample bottle/test tube and a choice of how to present it (the nurse didn't literally give me a choice....I had to think for myself). So, should I just leave the sample in the pan, put the sample in the bottle and let the nurse clean the pan or complete a controlled release, put the sample in the bottle and clean out the pan. Well, as a true gent and in truth, feeling too guilty to let the nurse 'clean up my mess', I chose the later. So, there you have it, even when I'm not feeling at my best, I'm still too much of a gentleman to subject a nurse to stool scooping. What a gent!!

Neutropenic

It's official, the signs have gone up on the door, time to stop mixing with the great unwashed, salads are off the menu, it's the start of my protective isolation, I'm neutropenic.  My neutrophils are now 0.1 and anything under 0.5 is considered neutropenic. They were 'expecting' a spike in my temperature last night, but I had a good night sleep and up until now all my vitals have been good. My Hb or haemoglobine count is 10, my platelets 89, so no need for any blood transfusions just yet...that will come later this week though. No real mouth ulcers to write home about so, the key for my body over the next week is to avoid picking up an infection. If I do I'll be hooked up on IV antibiotics so they can quickly gain control. I'm even starting to eat a bit more now, which is just as well because my weight has dropped from 83 to 79kg since the chemo. Todays menu, home made tomato and bacon risotto, freshly prepared at the E Rd kitchen by my good wife...lovely...mind you, it keeps her busy whilst I'm not around to annoy her!!

So, I guess in summary, it's all currently going to plan as far as treatment and my reaction to it are concerned. I am the star patient according to my doctor, stats always good, no hassle....teachers pet in many respects!! Could try to pick up an exotic virus just to stretch her, but you know what, I'm thinking the current situation suits us both just fine. Supposedly, now I'm neutropenic, the side effects from the chemo will increase again, since my body can't fight. But, for today (day 6), I'm feeling fine....tomorrow....well, that's tomorrow!

Day 3 and feeling better

Day 3 (Day 0 being the stem cell transplant) and I'm feeling better when it comes to the nausea.  I still have my ups and downs, one moment feeling dizzy and sick, the next....just feeling old, but overall it's improving day by day. My neurophil count is currently 2, so I'm not likely to go neutropenic until Tuesday....but we'll just have to wait and see what joys that brings!! Every meal time remains a chore, with absolutely no appetite, but realizing that I've got to eat.

It's been great to be able to keep in contact with many of you via text, Skype and phone calls, helps keep my spirits up and boredom to a minimum. Len and Marcus came up to visit yesterday and it was fun to hear Marcus' mad dog extreme winter sports stories from the hardcore peaks of Richmond Park....surprised the lad made it out alive!! Looking forward to seeing wifey again tomorrow...with a bag full of clean laundry....got to keep her busy!!

Extreme nausea

Yesterday was not much fun....wouldn't wish a day like that on anyone. I felt severely nauseous from about 4am Wednesday morning all the way through to about midday today...you know, just when you're on the verge of throwing up the whole time. Unfortunately all the anti nausea drugs in the world couldn't get on top of it. I couldn't get to sleep....not even with the soothing waterfall percussion coming from the man in the room above me weeing every hour, so it all adds up. Before you ask, I haven't yet witnessed a number two resonating through the concrete ceiling!! My appetite has also disappeared, so trying to get any sort of food down me is a real chore...but I've got to try so I can keep my strength up for when I go neutropenic.

Unfortunately the nausea ment that I couldn't fully appreciate the actually stem cell transplant that took place at 10:30 this morning. Fortunately Len was up here to enjoy the whole 'Heston Blumenthal' experience. The nurse brought the stem cells, which were cryogenically frozen, into the room in a tank of liquid Nitrogen and proceeded to immerse them in a warming bath to thaw them out. They were then served to me in an IV drip bag. No side effects from the re-introduction of the stem cells so far.

Anyway, I'm feeling a little better now (hence the blog) and hopefully things will continue to improve from a nausea perspective over the next few days. Hang in there Hoban!!

Room 13

Been a bit of a waiting game today (well, actually a day of weeing into bottles...enough said) but the chemo is finally in. Unfortunately it was delayed by 6 hours.....my northside brothers got the first mix wrong....but, as they say, there's no going back now!! Len's here for both support and as apprentice ice lolly lady.....apparently it reduces the potential for mouth ulcers. For now, I'm all good.

Let the battle commence

So, the big day has arrived. Dad is going to take me up to hospital, check in 16:30. Many thanks for all your kind words of support, notes, presents and/or sarcastic abuse. Please do keep up the blog comments, text or e-mail....they do give me a real lift. I intend to write as many posts as I can whilst I'm in isolation, depending on how I'm feeling....one day at a time. It's also fantastic to know that Len will be able to visit me, even when I'm neutropenic....the doctors are more concerned about me becoming infected from my own body than potentially any external source.

It's been a great lead in weekend for me....if I conveniently forget the disaster that is Arsenal FC and the fact that our fish tank decided to start leaking. I even got to choose my favouite meals for Saturday and Sunday (opted for skate wings and lamb chops)...little bit like being on death row I guess!! From now on it's a special menu for me....all fruit and veg needing to be cooked to within an inch of it's life to ensure no bugs (or vitamins) remain. Saying that, by all accounts I'm not likely to have much of an appetite whilst I'm in quarantine.

Deep breath, think positive, here we go.

Order of Events

Ok, here we go...some info on the order of events over the next few weeks. If nothing else, at least you'll have a better idea of when to phone me up and explain how healthy you're feeling!!

The fun all kicks off next Monday 14th at 16:00, when I'll start by taking some lung medicine through a Nebuliser (a machine that creates a mist of medicine, which is then breathed in through a mask) before I have the high dosage chemotherapy. As I understand it, this will help protect my lungs from bacterial infection such as pneumonia when I go neutropenic.

Tuesday 15th (Day -2) - in goes the Melphalan. Apparently this particular chemo tends to effect the gut, so mouth/stomach ulcers and diarrhoea are all thrown into together with the other potential side effects.....am I selling it to you?

Day -1 - a rest day so I can really take my time and enjoy the mouth ulcers, nausea and diarrhoea.

Day 0 - the stem cells collected before Christmas go back in. This will be done intravenously through my Hickman line, where the stem cells are fed back into my blood stream, from where they 'somehow' know to migrate back into my bone marrow. I hope my stem cells have a good sense of direction, but I promise to post pictures if other limbs etc start to appear!!

Day 3/4/5 - this is when I'm likely to go neutropenic as a result of the high dosage chemo destroying part of my bone marrow. A this point my neutrophiles are effectively zero, so my body will have no natural ability to fight infections. I'm very likely to have an infection/fever, or infections during the time I'm neutropenic, which are likely to originate from my own body. All the various bugs and bacteria which are always present and usually dealt with by a normal immune system will have nothing to hold them back. This is when it will be vital for the medical staff to identify the source of the infection and treat it with the appropriate antibiotics. Even my Hickman line is a potential source for infection. During this period I'm also going to feel very tired and lethargic, as the chemo will also destroy my red blood cells and platelets (blood clotting cells). As a result I'll require transfusions until my blood counts recover. If the chemo didn't sell it to you, I hope this has!!

Day 10 - we start with the GCSF growth hormone injections, which give a boost to the bone marrow cells. These are the same injections I had as part of the stem cell mobilisation, before Christmas, with the main aim of putting marrow cell production into overdrive.

Day 12/13/14- it's hoped at this stage that the stem cells have started to engraft and my blood counts are improving. This being the case I will be weaned off antibiotics and other medications.

Once my neutrophiles have reached a safe level (1 to 1.5)....hopefully only a number of days later...I'm out of there!! We're then looking at a 3 to 6 month recovery period as my blood counts continue to improve and my strengh hopefully returns to somewhere near pre transplant levels.

The above 'schedule' TOTALLY assumes there are no major complications throughout the transplant, which will set me back. Who knows how my body will react.....this whole process will be very tough on my organs. What I do know is that I'm going into this final stage of my treatment feeling confident, but realistic. As I stated in my last blog, my body has tolerated the treatment very well so far.....not only that, but I have age and your positive thoughts and prayers on my side. My apprehension is really starting to build as Monday gets closer....it's been a bit of a waiting game this week. The sooner I start, the sooner it will be over and the sooner I can begin that long road to recovery and a return to a more normal life.

118 Percent

Blog groupies wait for no man (so Len tells me), so it's probably best that I provide an update on what's been happening in my drug fuelled life since New Year. To put it simply, I'm now officially 118 percent of the man I should be for my age and body mass.To most of you, this probably comes as no surprise, but for the doubters amongst you, I feel abliged to explain this some what bold statement.

I went up to Hammersmith hospital on 2nd Jan for my pre transplant 'work up'. This was to confirm that my vital organs are strong enough to go through the high dosage therapy and consisted of various heart tests (ECG and blood flow), chest X-Ray and lung function. They also took a LITRE of my blood for various tests (I did have slightly raised eyebrows when I heard how much was being taken). As far as I'm aware the results were all positive, but it was my lung function that was particularly impressive, being 118% of the predicted level. I've simply taken this figure and logically applied it to my entire manhood.....statistics never lie you know :-). Most importantly, if anyone's got a kiddies party coming up and you need loads of baloons blowing up....I'm ya man!!

On a serious note, this all means that I'm good to go when it comes to the transplant. The latest plan has me going in on Monday 14th Jan, with the high dosage therapy on 15th and the stem cells reintroduced on the 17th. Part of the 'work up' also involved a discussion with one of the transplant ward doctors, to run through the schedule of treatment and likely scenarios/side effects. I'll update you with more details in my next blog. What I will say is that I've tolerated the treatment well up till now, and with age on my side I'm going to try and approach this as positively and confidently as I can. I do however realise that this final stage of treatment will be far more aggressive to my body than the previous phases, and the likelihood is that I'll pick up infections whilst I'm neutropenic i.e. have no white blood cells/antibodies as a result of the chemotheraphy killing off that part of my bone marrow. Again, side effects from the chemotherapy and re-introduction of my stem cells can vary, but I've been talking a lot with my body during this treatment and I will continue to do so, as it's done me proud up till now.

As I said, I'll give you a more detailed view of what's to come in my next blog.....but for now its off to bed for this 118% man!!

Here's to a Healthy 2013

Happy New Year to you all!

I hope you made a better attempt at getting blind drunk than my pathetic efforts.....half an ale, glass of white wine and two glasses (steady now) of champagne. That said we had a great time last night....the first New Year spent with my parents since I was about 15!
78 years old and they've still both got more stamina and energy than me!! Not only that, they were both up for a bit of midnight 'Gangnam Style', choreographed by a patient, if slightly embarrased Marcus. Ehhhhhhh.....sexy lady!!

We've had a relatively chillaxed Christmas (apart from the last minute panics associated with cooking Christmas dinner) and its been fantastic to meet up with friends over the holidays. We've enjoyed a number of Christmas get togethers with local friends and I even met up with an old university mate who I hadn't seen for the best part of 12 years. Once again, it gives myself, Len and Marcus such a lift knowing just how supportive and encouraging you all are. I'll be taking your love and positive vibes when I go into hospital on the 13th for my transplant....and I'll be taking your names in vain when I've got my head buried down the toilet after my next round of chemotheraphy!!



We wish you and your families a healthy 2013.
Much love to you all!