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.....