Well its not that bad is it?
I think Sue did a brilliant job, its really pretty short but she managed to keep a few longer layers so it doesnt look like a basin cut ! She has also positioned the fringe so when I have the 'horn' removed I can change my parting to cover the bald spot. Clever huh?
Unfortunately I cant have a colour put on my hair for another 3 months so thats the real me now - which hasnt seen the light of day for many years !
.........and it will come out'. Except it didnt. Not after several quick hard painful pulls.
I had an inkling it was going to be one of those days when the QE bed manager rang saying 'I have a bed for you - but its on the Young Persons Unit' Now, in a dim light and viewed from a distance I can probably knock a few years off, but there is no way Ill ever be mistaken for a 'young person' again. But it was the only female bed available so it would have been churlish to refuse it.
My fears were confirmed when we arrived on the ward, were shown to my bed, and yes - I had my very own X-Box. Martin, ofcourse, thought it highly amusing. So did the nurses by the looks on their faces.
By now it was 12 o'clock. Id been told I would be 'done' sometime between 1 and 5, and knowing 'NHS time' I guessed that meant about 6, so I settled down for a long wait.
At 1.15 exactly the surgeon appeared by my bed. It seems he had taken pity on me and had decided to 'do me' there and then. On the ward. Brilliant.
He had a trolley full of equipment including scapels and sharp pointy things which was a bit disconcerting to be honest. In a flash he was gowned and gloved up and pulling sharply on my Hickman line. The one thing he hadnt got was a scrub nurse, which was necessary as he was 'sterile' but we had got a 'Martin'.
'Nurse Martin' relished his new found role and was soon rasing the bed, adjusting the light and assisting generally. He was loving it.
Anyway as I said even after a few really hard tugs the line refused to budge. It had knitted itself well and truly in - which ofcourse its supposed to do. Hickman lines can stay in for up to a year, there is a little 'cuff' at the top of them which encourages your flesh to heal and knit around it. So out came the scalpel. Even though I was well numbed by local anaesthetic I could still feel him cutting away at my skin. It didnt really hurt, it was just very uncomfortable. I couldnt see anything ofcourse as it was right under my chin, but Nurse Martincould and was fascinated it seemed - his nose about 6 inches away.
All of a sudden with a gush and a plop and a trickle of something warm down my neck it was out. A couple of stitches, a dressing and it was all over. I could go home after lying flat for an hour. Nurse Martin was thanked profusely for his help and the surgeon (I didnt get his name) was gone.
The nurses were still sniggering as I thanked them for my couple of hours as a young person and left. Nurse Martin had had a whale of a time and on the way home described to me, in great detail, how the line had been 'hacked out'. Its a pity I hadnt been present at his vasectomy and could have returned the favour.
I expected it to be a great relief to have it removed and when the pain wears off it will be. Right now it feels as if Ive been stabbed right next to my collar bone, which in effect I was - several times.
But its ok, Ive got Nurse Martin here with me - expert in Hickman line removal now.....
....I go into the QE to have my Hickman line removed. Or rather 'yanked out' as it was described to me. Apparently its quite a simple procedure but has to be done in theatre by a surgeon 'just in case'.
Just in case of what I wonder? Probably best not to think about that I guess. It will mean a whole day on the ward waiting for a slot in theatre which doesnt sound like a lot of fun. It will be worth it though, Im really fed up of this piece of tubing sticking out of my chest. It doesnt cause any real problems apart from at night when I often roll over and end up with the clamp impaled on my boob. Thats painful !
Im hoping to resolve the 'hair situation' later this week. Im having it cut Ive decided. Quite short. It really is tatty now. If I had saved the amount that has fallen out I could have knitted a jumper ! Ofcourse I shall have a big bald patch shaved in it next week when I have the horn removed anyway so maybe that wont be so visible with a shorter style? Or is that just wishful thinking? haha
........my hair is falling out. Not exactly in clumps but certainly in handfuls. Im blessed with thick hair but even so I look like a tatty camel whos moulting ! The kitchen floor is covered in my hair, not matter how often I sweep it up. You can tell its mine by the tell tale attractive dark roots - I havnt had my highlights touched up for a while. Why arnt they grey ones falling out? I wouldnt mind that so much !
Its in dreadful condition too. So dry. It has the texture of a bowl of Shreddies and it makes no difference which, or how much, conditioner I use. Maybe I should have it cut really short? Or will it all fall out anyway? Hair loss isnt listed as a side effect of IL2 but 'hair thinning' is. There isnt a lot of difference is there? It means the same thing - your hair will fall out.
Funnily enough Ive noticed a certain amount of 'hair thinning' on my body too - especially on my legs and arms. Ive hardly any hair left on my arms at all now - I only had little fair hairs but now I have completely bald arms !
So what shall I do? Hang on to the rest of my hair or go and have it cut really short?
Gosh I feel better. Its as if the 'IL2 fog' has lifted at last. Although still feeling a bit tired Im managing to get out and about and do things at last. Im still waiting to have my Hickman line removed but Im on the list at the QE and should be called in the next couple of weeks.
I hope so. Because I did a naughty thing last week and booked a holiday. For just Martin and I. No kids !.....needless to say they are NOT amused ! Were going to Fuerteventura (see pic above) for a week on 30th April. Just the two of us and I really cant wait. We have never had a holiday on our own since the children were born. Even now, when they are 23, 17 and 15 I shall still worry about leaving them. Martin is more worried about them having a party and trashing the house !
Its important Martin and I get some time together - on our own. Things have changed over the past few weeks and although we have acknowledged the fact, we havnt really discussed it. To be honest Ive been doing my 'ostrich act', head in the sand, just carrying on as normal. But yesterday I was told I have been referred to our local Hospice community nurses - and thats really brought it home to me.
Im really hoping we can have this holiday and I can start taking Sutent after. Some people suffer quite nasty side effects with it - some seem to tolerate it really well and Id rather wait till I come back to see how I cope with it !
Im SO lucky to have received funding for Sutent. It seems every week now there is an item on the news about a cancer patient who has been denied one drug or another. And its not just kidney cancer - bowel cancer, lung cancer etc ... so many patients fighting for the drug they need at a time when they should be enjoying life with their families.
I still havnt heard from Mr Levek about having my lumps removed - he had better pull his finger out and get me sorted in the next couple of weeks. It will be bad enough going away with a big bald patch on my head but I really dont want stitches in my face as well ! Ive added them up and I shall have 6 scars on my body then - all I will need is a bolt through my neck and Ill look like Frankenstein !!
I dont care though. Its not important. The important thing is that Im still here, feeling well....and in a few weeks will be packing my bikini !
After a couple of 'down days' Ive decided its time to get a grip. Ok - so my 'full and durable response' has gone but I still have the hope of Sutent working and delaying the progression of my disease.
I need to get fit - well fitter at least. Having spent the majority of the past 4 months almost bed bound by the side effects of IL2 Im incredibly unfit and SO stiff. I need to build my energy levels back up and be as well as I possibly can be for as long as possible.
So Im going swimming - as soon as I get this Hickman line removed. Just a couple of times a week to increase my suppleness more than anything. And to tone up what muscles I have left !
And Spring is here at last so I shall spend more time in the garden. And I shall walk more - and I dont mean just pottering around Tescos !
Were really lucky here, we have the countryside right on our door step with the most beautiful walks a few minutes away.
So thats my plan - I need to feel as if Im still doing something - still fighting - and I think this is the best way at the moment. It will get me out of the house as well, just in time as I think Im starting to go stir crazy !
.......actually there are 4. One by my nose, one on my head ( the horn) and two under my right arm pit. And they are all growing so need dealing with fairly quickly.
In the case of the ones on my face and head that is relatively easy - Dr P has referred me to a comestic surgeon called Mr Levek who will deal with those.
But the other two, the ones under my armpit, arnt so easy. They are quite deep within the tissue so not suitable for an operation.
So the decision I was so worried about making has been made for me really. I need to start taking Sutent. Which means I can wave bye-bye to my 'full and durable response'. IL2, which may have been working on my internal tumours, isnt touching these skin lesions and they are growing at an alarming rate.
Prof H was right then - and thats the end of my IL2 journey of hope. I have to admit part of me is SO relieved not to have any more of that vile treatment but Im not sure the full implications have sunk in yet.
I shall see Mr Levek in the next week or so to get my horn and my nose lump removed. Then have a CT scan in April. Then start Sutent. And pray it works. And buys me some time.....
Its a strange feeling. I wasnt in any pain, apart from my fingers being cold and stiff, and yet my oxygen sats were only 82%. I knew that was really bad but I wasnt worried for some reason. Carla, my nurse, obviously was though. Although remaining calm she was talking at me constantly to make sure I stayed awake with one eye on the monitor. It didnt take long on 100% oxygen for my sats to come back up to 98% - then I was worried ! Like before when I had gone 'loopy' it was only afterwards I realised the full implications. When Carla walked into my room and said 'God your BLUE !' I just smiled at her sleepily.
Carla is an extraordinary nurse. Probably one of the best Ive ever either worked with or been looked after by. And thank goodness she was looking after me then - recognised the signs - and dealt with them quickly and efficiently. Reassuring me all the time.
This was my third dose, and although the first 2 had been pretty horrendous, definitely the worst so far. The decision to continue and have a 4th wasnt easy. It was only Carla reassuring me that she would keep a close eye on me and it would be fine that finally convinced me. It wasnt exactly 'fine', but at least I didnt have a repeat of the very low sats, mainly because Carla kept me on oxygen all the time. But that was enough - I honestly couldnt take any more. I was totally exhausted, hadnt slept in 3 days due to the side effects which were as bad as ever.
Later that day I was waiting for Martin to come and pick me up - I dont think Ive ever been so happy to see his smiling face ! - when Prof H popped in to see me. And we had a very worrying and confusing conversation. I had seen him on the Monday before my treatment started and he seemed happy with the way things were going. But now he was voicing concern about the skin lesions I had and querying whether I should start Sutent immediately instead of going for surgery. This really confused me. I had always been told by everyone that surgery, whenever and wherever possible, was the preferred first line of treatment. Cut it out. Get rid of it.
I wasnt really in the best condition to make any decisions right then so I just said I would chat to Dr P about it next week when I see him on Thursday. But it did come as a bit of a blow. Prof H is obviously concerned about these skin tumours and wants them under control as soon as possible. Sutent, apparently, does work very well on them - if it works for you. I shall have to think about this very carefully. If I do start taking it then I can forget about any 'full and durable response'. You take it for the rest of your life. And it can have some nasty side effects.
I need a break. I need a rest. I need to feel WELL for a while - longer than a couple of weeks. Im back home and feeling dreadful again ofcourse and I know it will be at least another 2 weeks before I feel normal again. I need to be able to eat properly, and not sleep for half the day and be able to do small things without getting totally exhausted. And to be able to get out of the house - I feel like a tortoise right now - hibernating during the winter !
