Sunday, 26 August 2012

Food glorious food

Finally, I'm beginning to take on board that I am actually quite seriously ill, and that I need to start behaving accordingly. Don't worry, I've no intentions of dragging a poor, pathetically limp barefoot body around the place wailing woe-ridden self-pitying nonsense, more that I probably need to slow down a bit, take stock and accept that I can't actually attempt to change the world on every single day. 

Two days away at the Penny Brohn Cancer Care Centre on their Living Well with Cancer course has done me the power of good. They used to be known as the Bristol Cancer Care Centre, and they are world famous for their "Bristol Approach" philosophy. WM and I had a glorious time! Think 5-star hotel accommodation coupled with getting the type of welcome and care you'd get from your very best and oldest friends. Add in the most amazing 4 acres of gardens and fabulously delicious food, and although it was only two days, it gave me the chance to step back and take stock of where I am, what is happening, and how I can get through it all. 

They take a "whole body" approach to cancer, working alongside the very best of what we are offered by our Oncology Teams, their focus is on keeping the mind, body, spirit and emotions healthy and balanced. The two days were jam-packed with workshops and talks on everything from nutrition to meditation, exercise classes to getting lots of rest, and it was quite intensive, but this meant it had quite an impact on me to. 

There were nine of us on the two day course, 6 with cancer, and three "supporters" including WM. It really bought it home to me how arbitary and random and unexpectedly this disease strikes. All of us were just bumbling along, minding our own business and living our lives when BOOM we get cancer completely out of the blue. Everything from that moment changes, with hospital appointments, treatments and procedures taking over every aspect of one's existence, and dealing with post-operative pain, mulitation, self-confidence and self-esteem issues, drug-related side-effects, hair loss, radiotherapy burns, the list goes on and on and on. 

It's very easy to go over the edge into depression and despair - not only about the fact that this cancer may actually kill you very prematurely, but also just because dealing with all the brutal but highly-effective treatments can be very traumatising, painful, and almost unbearably dehumanising. Privacy goes out the window, as does any sense of being in the driving seat of your own life, and how you live it. Cancer and it's treatments create people who feel broken and frightenend and lost, and the Penny Brohn Centre is there to give people back a sense of control and ownership of their ability to get better.

I was quite apprehensive about going, but now I'd really recommend it to anyone. Watching the change in other people too was really uplifting - some arrived in despair and left with real hope. I had done a lot of reading around the topics of complementary cancer therapies, and they all made a lot of sense, but trying to fit them into an already over-busy life just seemed one step too hard, and also packed me full of a load of unnecessary guilt too that I wasn't implementing everything. The Bristol approach is much more realisitic - make one small change every now and again and really work at it, rather than set yourself up to fail by trying to making too many radical unrealistic changes all at once that you'll never be able to manage.

I learnt as much from the others on the course as I learnt from the Centre too. How to deal with hair-loss, how to maximise the effects of chemotherapy, where to buy the best underwear for mastectomy prosthesis - even how to feel more positive about my horrible mastectomy scar - someone asked me how long my "shark bite" was, and I just found that really funny. So I'm now calling it my Shark Bite, which makes me feel like a proud, brave survivor instead of someone who has been just been hideously mutilated. I hope to keep in touch with everyone online and through facebook, and yesterday a lovely parcel arrived for me from on of these new friends - lots of beautiful headscarves and hats to wear for when my hair fall out, probably in a month or so from now.

I also lost 4 whole pounds from all their healthy eating. Not a biscuit or any sugar in sight. This is the part of the two days that I am really trying to continue at home - so far I have already baked a rice-flour loaf of bread, made my own houmous to spread on it, created a rather strange, but OK, salad dressing, and we've eaten more salad in the last couple of days that we've had in the previous two years. There is so much evidence about diet and banishing cancer, and how cutting back on additives and eating mostly plant-based foods creates a physiological environment that cancer really struggles to survive in. 

I've also bought myself an exercise bike. Gone are the days when those of us who are seriously ill are allowed to lie and bed and look wan and romantically weak, oh no, now you are expected to exercise yourself back to fitness. But a girl has to do what a girl has to do. I'll be a stick insect by the end of the week with a Jessica Ennis stomach. 

The one big change is that I have finally realised that I am seriously ill, and that the rules and the goalposts have to change accordingly.  Normally every morning I get up and make a "To Do" list, and race through the day beating myself up for everything I haven't managed to tick off the list, either because I was over-ambitious, or because procrastination set in. I have finally accepted that I am  much more important than the house and the housework, so although of course there will be a bit of that on the list every day, there will also be loads of things like rest, read, watch TV and enjoy being alive, too.

I've got a whole week before the chemo starts, and the steroids and the hairloss and the sickness and the muscle weakness and the mouth ulcers and the lack of tastebuds and the weight-gain and the total wipeout exhaustion that that is supposed to bring. Everyone who sees me is amazed how well and "normal" I look, some have confided that they were really apprehensive to stop by expecting to find me looking really weak and ill. Between now and Christmas I'll probably look terrible and feel even worse, but that's what's got to happen to get better, and to poison any little cancer cells still wanting to party inside me means that I'll have to cope with some of that poison too. It's not going to be easy, but anything that is really worth having very rarely is, and at least I won't have to deal with many "bad hair days" in the next few months because I won't have any to worry about. Bring it on, let it happen, and I can't wait til I'm through it all and out dancing on the other side.

Monday, 20 August 2012

Wigs and bras and silicone tits

In case you were worried when reading my previous blog entry which must have seemed like it was written by the mad woman of the west,  I haven't actually bled to death yet, even though I was sure I would have done by now. Slowly but surely, I'm getting my head around the whole Portacath issue, and I'm in a much better place than I was.

I'm exhausted after an extremely busy day, but very good day - I've hardly had time to draw breath since I got up. Some very encouraging developments concerning Toby have brightened my mood considerably today, as did a long, interesting and very informative consultation with my Medical Oncologist Consultant, the first time we met.

I really don't know how the hospital manage it - they find these really clever people, absolute leaders in their fields, and you would imagine that they would be so up themselves and arrogantly distant, and yet they are so not. This chap was Mr Calmly Reassuring, but he combined these skills with such warmth, empathy and compassion, as well as a generous dose of humour, that I came out feeling so positive all over again. 

He listened, he explained in language that I can understand, he printed off reams of documents for me to read, and he gave me 2 whole hours of his time. I now know that I'm going to have 6 batches of chemotherapy, starting probably on the 4th of September, each given 3 weeks apart. The cocktail of chemo I'm getting is called FEC-T. the FEC part is given during the first 3 sessions, and the T part is given for the last 3. I need a heart scan before it can start, I will also need anti-sickness drugs and steroids too, so I will blow up like a balloon, but, hey, so what if it blasts the cancer cells to smitereens. 

I will also have a drug called Herceptin, again dripping slowing into my bloodstream through the Portacath, and I was somewhat shocked to take on board that I'll need to have this done every three weeks for a whole year. I'm also taking part in a clinical trial, so there may be an extra pharmaceutical weapon given at the same time, or a placebo instead - only half the people accepted onto the trial get to have the good stuff too.

Then, once the chemo has finished, I'll have radiotherapy but don't know the details of that just yet. Then it will be 5 years of taking a drug similar to Tamoxifen but apparently better, which blocks Oestrogen production, which is one of the 3 factors that my particular cancer feeds on. 

Mr Calmly Reassuring also, after a lot of me reassuring him that yes, I really did want to know, put my details into a software programme that calculates my true survival rate. If I just opted for the surgery I have already had coupled with Radiotherapy, I would only have a 40% chance of being alive in 10 years time. If I also have Chemo and the Oestrogen blocking drug, this increases to a very encouraging 70%. There are no figures yet for factoring in Herceptin because it hasn't been used for long enough to have 10 year survival rates, but it is likely to up the odds a bit too. 

This evening, we celebrated my Aunt's 85 birthday (the amazing cancer survivor who was told she had at best 6 months to live in 1983), with her two daughters, my dad, my daughter, WM, Toby and my friend, Anita. My Aunt bought over a lovely letter from one of the nuns in the Abbey near where she lives, who assured her they are all praying for me. It was very moving, and also deeply reassuring. What with Mr Lovely's surgery and Portacath, Mr Calmly Reassuring's intravenous cocktails, and a whole Abbeyful of nuns praying for my speedy recovery, I think my own particular survival statistics must be pretty damn close to the best you can get.

Tomorrow WM and I are heading off towards the West Country for a two day mini-break at a centre specialising in complementary therapies for cancer patients, where I will be learning all about all sorts of things I can do to further boost my survival chances. It's probably far more up WM's street than mine, but I am so looking forward to just getting away and maybe having a day or two to get some head space to thy and make sense of the last few weeks.

Altogether I've got about two weeks off before the next treatment chapter starts. In that time, I've got a stack of things to get through. Firstly it's these two days away, then a heart scan to check that not only do I have one, but it's working well enought to cope with chemo. Then I have to make an appointment to see a speicalist mastectomy bra fitter to buy a bra, before making a further appointment to meet with the department who will organise a proper breast prosthesis.  I will have a silicone weighted one that fits inside a pocket in the bra. It's made so that if ever I get the energy again to run for a bus, both sides will wiggle the same way. Then I'll have to see a dentist because one of the side effects of chemo can be an incredibly sore mouth, so any potential dental issues are best dealt with beforehand. I'm also going to meet with the NHS hairdresser (who would ever have thought there would be such a thing!) who needs to meet me before my hair starts falling out so she can help me choose an appropriate wig - maybe this is my last ever chance to have long, flowing, straw-blonde hair, eh? That would get me noticed, but probably not in a good way! I also have a backlog of desperately urgent paperwork to finish, lots of messages and emails to reply to, not to mention a house that's in dire need of some housework.  If there is any spare time at all, then I'll try and do the really important stuff - sleep, eat, drink red wine, chill, relax and factor in a lot of fun and laughter too - would anyone like to volunteer with the fun and laughter bit please?!

Saturday, 18 August 2012

Fly me to the moon

My coping skills are having a day off today, and I'm being the biggest wuss on the planet. I've got my new Portacath fitted and I'm so far not liking it one little bit. Yesterday evening, Mr Lovely opened up my jugular vein in two places, one to fit the Portacath, and he probably had really good reasons to open it in the other place, but I haven't got a clue what they are. All I know is that I now have two dressings which are very slightly seeping blood, and every movement I make I'm convinced will open up the wound, snapping the stitches, and I'll bleed to death. Coughing is terrifying, even every step I take I can feel the pull on the wounds, and last night I was too scared to go to sleep until my exhausted body overruled my head.

On one level, I know it's ridiculous, and this is minor minor stuff compared to the mastectomy, lymph node total clearances and lumpectomies I've had recently, but this my head is playing real tricks with me and it seems like the worst ever thing that I've had to go through. The pain from the wound is actually very low level compared to everything else I've had to deal with recently, but vein pain is very distinctive, and knowing that there's a new foreign body stitched into my jugular with a long tube running down it's length to my heart simply feels very wrong, and very frightening.

I know I'm acting like a precious princess, and you should have seen my lovely kids F and A rolling around laughing at my declarations last night that I was about to bleed to death, but I just feel so vulnerable. My left arm is my good one, or at least it was, whereas today I'm spooked by using it to even hold a cup of tea. Sleeping positions were scary too - what if I squashed it and it popped out of place? What if I didn't squash it and didn't even know that blood might be pouring out of it?

I'll be OK in a few days when I can convince myself that the wounds are healing and holding this thing in place properly, but until then I really have to find a way of getting my head around it. On a rational level, I know this is a "good thing", and it's going to make chemotherapy much less of an ordeal, but my needle phobia is really having a great day out today, it thinks its gone to Alton Towers, Thorpe Park and Disneyland and back, and it's certainly causing me the equivalent roller coaster reactions - people pay very decent money to have this level of fear and scary anticipation, and I'm getting it for free on the NHS, so I should be grateful for small mercies. If I had my way, I'd have an army of volunteers to watch me around the clock in case the worst happens. WM is being magnicifent, patient and caring, and trying really hard not to show his amusement at my patheticness, but he can't be awake and with me 24/7. I even feel vulnerable when he is in a different room at the moment.

The plan was that today I'd go out and buy an exercise bike. Chemo can put stacks of weight on, and I'm far too weighty already, and exercise is proven to play a really important part in banishing cancer cells. Well if breathing and walking is too scary for words,  the idea of ever doing anything even slightly exerting every again is quite, frankly, completely ridiculous and feels like a deathwish.

Hopefully part of this vulnerability is the anasthetic affecting my emotions, which often happens with me. I get very tearful and feel very vulnerable, but even if that is what's happening, and it is pharmaceutically-induced, it still feels very real.

Lots happened yesterday. I had to be up mega early to eat breakfast and have a cuppa before my fasting deadline of 7am, then my sister and cousin arrived to help get Toby ready, fed and dressed, because I'm not fit enough to do it. Mr Zip-Wire arrived too, and Toby thought it was party-time. Everyone really pulled together, and we got everything done and dusted that had to be done before I left to get to the hospital for 11am.

I walked onto the same ward where, two weeks ago, I spent 4 days behaving like a total pathetic wimp, and one of the nurses just ran down the corridor, threw her arms around me and gave me a kiss. What a lovely welcome! I was shown to a four bedded room with three other breast cancer ladies, and within minutes we were like old friends, laughing and conspiring together. One of the ladies has had terminal breast cancer for 15 years, and despite it spreading to her bones and brain and loads of other places, chemo has sorted out each problem as it has arisen, and she looked amazingly fit and well, with a fabulously positive attitude, warmth and humour. The more of these ladies I meet, the more I like them all.

As a bonus, I got the singing nurse! Her rendition of  "Fly me to the moon" would put SuBu out of business. The anaethetist came, and despite every bit of manipulative pleading, begging and cajoling I could muster, he was adamant. No I couldn't be put under with a mask, I had to have a canula inserted.

Then the wait began. It was after 5pm before I was finally called to theatre, 10 starving hours since breakfast. It's funny how, during those hours, resignation sets in. All those weeks ago when I met the "Vein Lady" and she told me about the Portacath, it had seemed so sensible, but so abstract and something theoretical that was ages away. Suddenly, I'm sitting there waiting for it to actually happen, and that felt almost surreal. I was very calm, with the lowest blood pressure I'd ever had, probably due to the hypnotherapy sessions I'd had from WM on the previous two evenings.

At 5pm the singing nurse and I said goodbye to WM and went to get the deed done. She promised to stay until I was solidly asleep, and she was simply amazing and somehow turned what should have been a fraught time into a party. Just as I was about to collapse in a heap as the needle was about to go into my hand, she told me to think of Tom Jones in a leopard-skin thong buying me a bag a chips to share on the beach. Well, what a very bizarre, and rather unappealing thought, but it just set me off laughing, along with the anaethetist and the theatre nurse. Best canula moment ever! And, as Mr Lovely reminded me, hopefully my last ever canula ever too, thanks to this new Portacath. I know I will get over this, and grow to love it perhaps. But that's for another day.

After surgery, more waiting began. I had to sufficently recover, a radiologist had to come in from home, and an xray taken to ensure that they hadn't accidentally pierced my lung in theatre (they really do know how to make a girl feel great, don't they?), It was just gone 11pm before we could finally escape and get home. Then I remembered that A was off on holiday early this morning, and the washing, packing and last minute shopping had been completely slipped off the radar. WM jumped into action, keeping the washing machine and dryer busy til the small hours, then up at the crack of dawn to get everything dry and packed.

The best bit about yesterday is that finally all the mastectomy stitches are out. This probably means that I have far more movement and far less pain in that side now, but I bet you know why there's no way I'm going to test that particular theory today!

Wednesday, 15 August 2012

Eventful days

Just trying to get my breath back after the past few eventful days, some really awful ones as well as a particularly lovely one and some just very busy ones.

I got very wound up and stressed out by two major issues concerning Toby, that both came to a head within hours of each other on Friday. Two very different and very difficult issues, one concerning incompetence which led to an incident that left Toby very frightenend and distressed. The other, possibly with potentially more damaging consequences for Toby's health and well-being, concerns ill-judged decisions being taken by professionals, who have also decided it's best just to steam ahead without having the courtesy to let me know anything about it. Of course it would be nice, as his mother, to be kept in the loop, but it's the fact this this decision could seriously endanger his health that is my major concern. Both issues of course were entirely avoidable, but now they have happened they have just piled on more stress as well as a significant amount of extra work.

I'm well practised at fighting Toby's corner, and have had to do it for years, but to need to find the resources to do it all over again when I'm still only a few days past major surgery is a tough one. It has also brought into sharp focus the importance of putting a legal framework in place to ensure that I remain his advocate. Once severely disabled children reach the age of 18, they become "vulnerable adults" and the role of the parent is significantly diminished to that of "carer". The only way around it is to go to the Court of Protection and apply for a "Deputyship", which is very expensive and complicated, but is the only way of ensuring that parents, who know their children the best and have their very best interests at heart, can still have a real say in what happens to their now adult children. I've now started this process, but it will take around 6 months, and in the meantime goodness knows what other silly or dangerous decisions might have been taken.  It's hard enough for any parent in my situation to protect their adult children from well-meaning but wrong decisions, but for me, it is so easy for them to say to each other "oh, let's not worry mum with that, she's very ill, you know", so that I don't even know until it's virtually happened.

So I've had a lot of emails to compose and send, with others still unwritten. The trick is to try and wait until I'm calm and mellow so they don't read like a stream-of-consciousness-rant on the page. This week, that's been far harder than usual, but to send the email we'd all probably really like to send would be completely counter-productive!

The fabulously lovely day in the middle of all this other stuff was Sunday, my birthday, which was just perfect. I reluctantly decided that I simply wasn't well enough for a party, with all the cleaning the house and cooking nice party food that that entails. So instead we had an "open house" all day long. Nearly all my favourite people turned up, a constant stream of people coming and going, which meant that I could spend quality time with everyone, while the wine flowed very nicely in my direction well into the evening. The last guests left just before 2am, so I was wiped out for a lot of Monday, but it was so worth it!

Cancer news - saw Mr L yesterday who has taken out half my stitches - every second one, so the wound now looks significantly less gruesome. On Friday I'm going back for more surgery - this time to fit the portacath. Then on Monday I'm off to meet the chemotherapy team for the first time to find out all about the next part of this magical mystery tour.

Next week, WM and I are actually going away for a couple of days. Still cancer-related, we're doing a 2 day course of alternative treatments and therapies, which will also focus on lots of self-help stress busting things (should have done it last week perhaps!) as well as good immune-boosting eating. Somehow I doubt that those doughnuts will feature very heavily, but a girl can dream. Mostly, I'm going to use the two days as a chance to step back and try and get my head around everything that's happened recently. They always say relaxation and visualisation is great for healing, but my mind just never gets the chance to slow down or stop to enable that to happen. Maybe next week it will, I'll let you know.

Friday, 10 August 2012

I feel a party coming on

Nobody can rain on my parade today - and I can't wipe the silly grin off my face either. It was follow-up day, getting the results of all the bits of me they cut off 10 days ago, and it all seems like very good news indeed. 

The lymph nodes on the left hand side - all three of them they scooped out to peer at down the microscope - are completely clear of cancer! I wanted to sing and dance with Mr Lovely himself when he broke that brilliant piece of news. He was very good at it too - I was already in a room, stripped from the waist up, preserving any last vestige of modesty with their very unfetching blue gowns, and sitting barefoot on his examination table when he walks in. Instead of pausing to close the door, or even say hello, he calls out from the doorway "Your lymph nodes are completely clear!". Then he shut the door, said hello properly and also said "I know how worried you were about that so I wanted to tell you as soon as I could." I don't think I could imagine a more brilliant way to start a hospital appointment. 

He took all the dressings off - so many that the Egyptian mummies must have turned in their sarcophaguses with jealousy - and had a really good look at where my right breast used to be. He is very happy with the wound healing, and is delighted that it finally seems to be infection-free, and checked that I still have a few days left on the antibiotics, which will mean I've been on them for 3 weeks altogether. He didn't want to take the stitiches out quite yet, but he has left them with no dressings on to let the air get to them. As long as I am really careful I'm now allowed to shower again, which will be brilliant news for my nearest and dearest because I must have been beginning to stink to high heaven. (I've learnt the hard way that as long as you keep your hair clean and combed and tidy, nobody seems to notice that you're filthy everywhere else).

Then he talked about the breast they removed. Originally they had estimated the tumour size to be around 2.2 centimetres, but lab results have showed that it was actually a whopping 14.4 centimetres - that's virtually 6 inches in old money, six times larger that they had bargained for. The best news is that they have managed to get a clear one centimetre margin in all directions. Not quite as great as the 2 centimetres they hope to clear, but the operative word in all of this is "clear", and that is so reassuring. 

I asked him if this all meant I am now offically "cancer-free". Yes, he said, I am "theoretically" cancer-free, they have cut away all the nastiness, and they are now going to treat me for the "what ifs". What if there are any stray cells that have escaped, and wanting to set up shop elsewhere inside me? That's why I need 6 months of chemo, followed by several weeks of radiotherapy, to put the icing on the cake, with total belt and braces, to make as sure as they possibly can that any stray little horrors are blasted into oblivion or burnt to a cinder. 

I also asked if mine was a particularly aggressive type of tumour because it has the HER-2 protein helping to power its growth, which from what I have read seems to be a sort of turbo-powered accelerant.  He said yes it is, but that is a good thing, because these HER-2 receptive cancers are treated very effectively by the new generation of drug therapy. Both my tumours were also powered by both oestrogen and progesterone which can also be countered by a whole load of drugs (when all three, including HER-2 are found together it's called "triple positive"). So there is a whole cocktail of chemicals I can swallow for years. 

Any stray cells that might be trying to build themselves a new power-base elsewhere will be descendents of the first two tumours, so will also be triple-positive. With all the stuff they intend to throw my way over the next several months and years, they really will have a struggle on their hands. 

For the first time since this whole cancer episode started 3 months ago, today is the first time that I can actually see an end to this whole thing, and that it might actually be a happy ending after all. I know that there are likely to be twists and turns and hurdles and frights ahead, but lets not even worry about them today.

The only slight fly in the ointment is that there is a lot of swelling on my back at the far end of the 10 inch scar, which is a bit uncomfortable, but I was mighty relieved that he decided he didn't need to drain it today. Back to good news - they didn't stick any needles in me at all today, so even my needle-phobia had a great day out. 

I'm going back on Tuesday next week to have the stitches out, they used old-fashioned, spidery stitiches because of the infection, and then I'm scheduled for surgery next Friday to fit the Portacath. 

Afterwards I had a few minutes with the specialist nurse, who gave me a really good little tip about my detachable falsie. I don't need to stuff it inside a bra which, even though I'm only wearing baggy old rags of bras, is still very uncomfortable, particularly with this swollen back I've got. Instead, I've found a tiny safety pin, and pinned it to the inside of my top - much more comfortable, although getting the pin at exactly the right spot is a bit of a challenge - it's drooping a tiny bit lower than the other one right now, but really, do I care?  No, I don't. 

The most astonishing thing is how, in the space of a few short hours, my feelings towards my mastectomy have altered. I know that this angry, livid, ugly 10 inch scar wouldn't win any conventional beauty contests, but I'm so proud of it. Not in an "look at me, I've had cancer, and this proves it" kind of way, but in a gentle, accepting knowledge that it has a hidden beauty all of its own, because it is right now, today, completely cancer-free, and will heal and settle as healthy, vibrant tissue. 

So decisions to make. I missed the Tennis Olympics at Wimbledon. Will I be well enough to travel all the way to Wembly on public transport, and wait in line for hours to pass through security, so I can take my place to watch Brazil and Mexico battle it out at the Olympic Football Final on Saturday. No I am definitely not well enough, and I loathe and destest football, but what the hell, I might still go. 

Then there's Sunday to think of. My birthday. I really feel a party coming on, but might the football, if I go, have wiped me out? I'll want to sing and dance and laugh and play all day with the best of them. And drink vino too, of course. A few months ago in the darkest moments, I sometimes wondered if I'd make it to my birthday, and of course it now looks like I will. I'll think some more about a party, and I may downgrade it to a "gathering", but don't be surprised if you get a very last minute invitation.

Sunday, 5 August 2012

Thank you

Four days at home have so far been blissful, especially since yesterday when I went back to the hospital and had the horrid drain removed. I grew to hate the drain – it went into my side at the bottom of my ribcage, all the way up to my collarbone, and it was a little spooky when I moved suddenly and so did it – often in the opposite direction completely. I had some funny moments with it, like the time I forgot all about it when I walked through into the kitchen and suddenly got stopped in my tracks because it had got caught on a chair. It was also quite good fun to pick it up and examine its contents at meal times, just to see my family's reactions. However, it didn't make sleeping very easy, and the final straw was yesterday very early in the morning when, turning over half asleep in bed, I suddenly realised that I had managed to split the tube into two bits. Very scary at the time, but with a wad of loo roll and then some sticky tape we mended it pretty quickly – maybe I should have been a Blue Peter presenter.

Going into the hospital meant getting dressed into real clothes rather than slobbing in pyjamas which I’m becoming really rather good at. That also meant realising that there are now stacks of redundant clothes in my wardrobe – even straightforward blouses with buttons down the front risk showing off the fact that I only now have half a cleavage. Deep breath, onto the back burner, and decisions for another day. I need to come to terms with the big huge lump of fresh air and nothingness where my right boob used to sit quite nicely. The process is starting to happen – I can now put my hand onto my new flatness, and when I was getting dressed I even looked at it in the mirror yesterday, when I made another discovery.

The bandage was falling off, gaping open, to reveal the scar with big black stitches in. They had to use old-fashioned needlework in theatre because of the infection – if they had needed to reopen the scar in the next few days it makes their lives much easier. So I had no choice but to look. The scar itself I think I’ll get used to, but the big black stitching looked like spiders crawling all over the place, which I wasn’t too keen on. So as well as removing the tube (not very pleasant) they also had to replace all the dressings, and I was very surprised to realise how long the mastectomy scar is – all the way from my breastbone, under my arm and just around the corner to the start of my back. It means I’m going to have to work doubly hard to get all my arm mobility back for the second time, but I’m actually pleased that they didn’t take any chances, and seem to have removed as much of my cancer-threatened flesh as they possibly could.

On the way home, WM and I decided to stop at the local M & S petrol station to pick up some posh sandwiches for a lunch, and suddenly inside the shop I remembered that I was one boob missing, which sent me into a bit of a panic in case anyone noticed and stared, and I couldn’t wait to get out and back into the safety of the car, where I had a little cry all over again.

Today, I got dressed again, and decided to try out my new falsie, which meant being brave enough to put on a bra. The most valuable piece of advice I can pass on to all women is never ever ever throw away that ghastly ancient baggy bra you’ve owned for at least 300 years. It may be grey and decidedly unsexy, but it holds the new appendage perfectly in place, and is as comfy as an old pair of slippers.

Watching the Olympics today has opened up new career opportunities – anyone else noticed that female marathon runners don’t seem to have boobs? The only problem would be if I actually won - it will be a while before I can manage the two-handed victory wave of success.

When Olympic gold medallists are interviewed, they always thank their “team”, the dozens of people behind the scenes that have helped them reach their success. That’s roughly how I feel. I have a fabulous support network of friends and family, and particularly since starting to write this blog, there is a continual tidal wave of love and support and encouragement that is carrying me through this horrid cancer stuff. I am so grateful to each of you, and very humbled, but it really feels like this is “our” problem, not just mine alone, and that you’re all there right with me on “Team Get Well Soon”. Thank you, particularly for all the messages of support over my recent difficult page about needle phobia, which I had been very anxious about going public with.

Most of the people reading this blog are people I actually know, but there is a growing contingent of people I don’t know, some  based all over the world, in fact a whopping 10% of all readers are US based now, with others in Russia, Australia and all over Europe too.  It  was a bit spooky when I first realised how many strangers are reading, but I’m  getting used to it and actually quite like the idea that people can care about complete strangers. So if I don’t actually know you, I’d still like to say thank you.

At some point this week I’ll take my new boob out for it’s first outing, and hope no one notices. I have to keep checking in case it goes wonky, or even worse, pops out, but once I’m feeling a bit more used to the whole thing, I think I’m going to have a lot of fun with it.

Friday, 3 August 2012

My needle-phobic past

When someone comes near me with a needle, I just cannot cope emotionally. My normal intelligent, rational, logical, sensible self evaporates into a fog of uncontrollable sobbing, and I feel myself being dragged back to the distant and not so distant past, vividly reliving awful previous experiences.

As far as needles, etc, are concerned, I have plenty of awful previous experiences to choose from, and it’s like a door opens wide in my brain and I just fall back into the past, as if these terrible things are happening right now,  in full technicolour and stereo sound, with my mind just choosing at random any one of a number of traumatic experiences to live through again as if for the first time.  

When I was eight, I was in hospital for a very long time. I had bacterial encephalitis, but it was misdiagnosed for the first 3 weeks, and I was getting progressively worse. Hospital was a very frightening place, and visiting hours were very restrictive, and only parents could visit. My mother, bless, her, never missed a day, which took an hour and a half each way on 3 buses, leaving my baby sister and big brother with whoever could have them, normally my grandmother. 

In those days, back in the sixties, hospitals wouldn’t let you wear your own clothes, and everything I was given to wear was ugly, old-fashioned and smelt funny. They even threw out my own pink toothbrush and gave me a regulation green one – I hated the colour green at the time. If anyone sent in sweets or biscuits they were confiscated, put into a big communal tin, and after lunch every day, if they felt you had been good, they would let you have just one. They never felt I’d been good so I would be shown all the lovely sweets in the tin and then it would be taken away before I could have one and the staff just laughed.  I simply don’t remember any small act of kindness towards me from the staff at all, only cruelty, intimidation, bullying and fear.

Encephalitis is the inflammation of the brain, and two of the symptoms are behavioural changes and delusions.  I had both, which probably made me dislikeable at the time, and I remember often being called a “little brat” by the staff. I wasn’t a little brat normally, but I was extremely ill, and very frightened, with a brain disease that was affecting my personality.  I also wasn’t stupid, and I knew that whenever I had cut my knee my mother had done all she could to stop the bleeding and make me better. I knew that blood should stay inside your body, and it was very bad if it came out. I also knew that blood was inside veins, which led back and forth to your heart, and that nature had made it so that just enough blood was in there so your veins couldn’t burst.

I was so ill and my white cell count was going through the roof, so I had to have blood tests several times a day. No one explained why, no one tried to comfort me. I couldn’t understand why they wanted to steal my blood and hurt me so much in the process. I now know that I have very difficult veins. They are buried deep, collapse easily, and are very narrow, so it’s particularly hard to get blood from me. Every time it would take them several attempts, and sometimes they would just leave the needle in my arm and sweep it around inside hoping to pierce a vein. Agonising simply doesn’t come near describing the pain.

I shouted, screamed, yelled and sobbed, and did everything I could to protect myself.  I was simply outraged, and thought they were trying to kill me by taking all my blood away. Their response? To hit me hard and repeatedly, or to put their hands over my mouth to silence my screams, or worst of all, to get several nurses and young medical students to hold me down and pin me in place. 

Although it seems unthinkable now, back in the 1960's corporal punishment was seen very differently, and smacking a child was not only an acceptable response to a naughty child, it was considered the responsible and correct thing to do. This was happening four or five times a day. Some of them seemed to actually be enjoying themselves, as if it were a bit of a sport to wind me up and make me worse. 

As they laid across me to hold me still, they would sometimes laugh and mock me. They would whisper nasty things quietly into my ear. The things they told me have stayed with me ever since, and even though I know it’s irrational, when I’m in that needle panic moment, I still actually believe them.  If I don’t stay still, my whole blood system will burst and I will die a slow and painful death. If I don’t behave, they will put poison in my veins. Some of the other things I can’t even bring myself to write down.  Some days even my teddies and dolls would be taken away because I had been so “naughty”.

It was made absolutely crystal clear that I must never tell anyone what was happening because they had the power to make things a thousand times worse, I was too scared to ever tell my mother.  I now realise she would have been furious, and would have moved heaven and earth to bring these people to some sort of justice and to have protected me had she known – she was as protective as a tiger when it came to her kids.  My mother was a nurse, and had trained at the very same hospital. 

I had a strong sense that she had once been part of this organisation, and must have known how horrible it was.  How could she leave me in such a terrible place if she really loved me? I would scream this over and over again when she had to leave at the end of visiting. It must have broken her heart.  My Dad came as often as he could, but working in Central London meant that getting there before 6pm when visiting time finished was impossible most days.  He too, was a total star, and he promised to buy me a present for every time they had to stick a needle in me.  We lost count at around 300, but he kept his word and I probably cost him a fortune.

Eventually I was diagnosed properly, but almost too late, and thankfully I was transferred immediately to a specialist neurological hospital much closer to home. Atkinson Morley is now the name of a block of wards at St George's Hospital in Tooting, but back then it was set in a beautiful old house near Wimbledon Common, with huge grounds and an ethos of compassion, connection and warmth.  

The staff there were kindness personified, visiting hours were whenever anyone could make it, and my brother and sister were encouraged to visit too. I could choose what to wear, either my own clothes or some of the most beautiful dresses I had ever seen that they kept specially for their “little princesses”.  They cooked my favourite food to tempt me back into eating, I had to keep my fluids up, drinking a glass of something every two hours day and night, and everything tasted funny and I couldn’t drink. So they introduced me to all sorts of exotic drinks, and I discovered pineapple juice, which I came to love. So they ordered crates of the stuff directly from Schweppes, and the nurses would wheel me out to watch the delivery van bring it all in to the ward kitchen. 

Needles were still an ordeal, but I would be cuddled and hugged and sung to and given treats afterwards, and it was explained why they needed to do it. When I was first transferred I was very seriously ill with no certainty that I would survive. Over several weeks, they went way beyond that extra mile and made me feel safe, happy and nurtured as they coaxed me back to wellness. I think my time there gave me my life-long belief that healing isn't just about medication, treatment and science, but about heart and souI healing too. I loved that place, and still have very fond memories of it. 

Fast forward 25 years, and I gave birth to Toby, who is the only person in the world with his very own, unique medical condition. He has multiple disabilities, and was so desperately ill for his first six years that we spent most of our time in hospital. It wasn’t a case of “if” he might die, we spent every day knowing that it might be his last. His prognosis was so poor that he was simply not going to make it.  

A few months ago, we celebrated his eighteenth birthday, against all the odds he has survived into adulthood. Still with the cognitive ability of a mainstream two year old, he is non-verbal with lots of medical issues and physical challenges, but he loves life. He is delightfully funny and engaging, with a hilarious sense of slapstick humour and he knows how to milk every moment for the most amount of joy he can squeeze out of it. 

Those first six years were so hard. He had 38 separate hospital admissions, and during each one we prepared to say goodbye on at least one occasion. Each admission would stretch for week after week, and sometimes month after month - our longest admission was for 8 months in a London teaching hospital.

Unfortunately, the vast majority of his hospital admissions were to that very same hospital of my nightmares. He has also had the misfortune to inherit my terrible veins. Getting blood from him was a dreadful thing to watch, but by the time he was born at least mothers were expected to stay with their children so I was always there to hold and comfort him. Getting lines in was really difficult, and if you look at the insides of his elbows, his neck, his ankles and behind his knees, you can still make out the scars of those hideous times.

Watching someone hurt your own baby is simply awful. Even though the adult in me knew why they had to do it, and that it was to help him, as I held him close each time I just felt the blind terror of my childhood. Looking into his eyes I could see he felt it too, but coupled with something much worse, a look of total bewilderment at my betrayal, because now I was the one who was pinning him down and holding him still. Every time they had to find vein access I sobbed my heart out for him, for hour after hour, and whenever he was on a drip I was just heartbroken for him.

When he was six weeks old and in intensive care, they had spent over an hour looking for a vein that would work. He was so ill, but conscious and in such distress. They finally found one in his ankle. The following day, he was in agitated beyond belief, and giving out all the signals of extreme pain. He was banging his ankle against the cot side again and again. I asked them if the drip was hurting him, they said no. I begged them to check, but they refused, saying that to check might mean that the cannula became compromised, and that they didn’t want to lose the only vein access they had found. Even now, 18 years later, I still beat myself up that I wasn’t more insistent, but at the time I simply didn’t know how horribly wrong things actually could go with a drip. They kept saying that this was a good sign, that he must be feeling better if he was able to protest at the bandage on his foot and stupidly, I believed them. As I am typing this, I am crying my eyes out, and I will never forgive myself for not protecting him better.

After several hours of distressing awfulness, they finally agreed to take a look, but insisted that I leave the room. It was nearly 4 hours before I was told what was happening, and even then they lied to me. They told me something had gone wrong and he had had an allergic reaction to the dressing on his ankle. By the time I saw him again, the foot was bandaged, and the drip was now in his scalp, his head had been shaved, and a plaster of Paris cap had been cemented on to keep it in place. It was a couple of days later when I was finally told the truth. The vein had collapsed, and as a result the cannula had dislodged into tissue. He had received a very severe chemical burn, and the bone was visible. 

He was already so ill and his resources so compromised that it took nearly a year for the wound to begin to heal, and along the way it got infected countless times. When people see the scar for the first time today they are often visibly shaken, it measures over 3 square inches and I’m sure many of his carers must think that I was in some way a neglectful and terrible mother, not realising that it was caused by a neglectful and terrible hospital incident.

There were several other awful moments with Toby and vein access, one of the ones I relive during my dark times is when he was 3 years old in intensive care in the London teaching hospital, attached to leads and lines galore, and he was in a very bad way indeed. He was unconscious, and not expected to survive for more than a few hours. I asked if I could hold him. It takes quite a few minutes to organise a cuddle under those circumstances, and several members of staff to help it happen, but eventually he was placed gently on my lap for what I thought would be our last cuddle. After a few minutes I began to feel wet, and asked a nurse to check. The button was pushed, the crash team came running, and he was abruptly taken from me before I realised that we were both saturated in his blood. The arterial line in his neck had come adrift. I was horror-struck, and just fled out of the room in a terrible state. It was hours before I could bring myself to return to him, because I thought I had actually killed him by wanting that one last cuddle.

At the time, I wanted to to be there for him every time they had to open a vein, but in hindsight I now wonder whether that was the right thing to do. All these years later I am still haunted by the look in his eyes during those times, and I wonder what he was thinking during his bewilderment, shock and distress. He must have wondered why his mummy was letting people hurt him, he must have thought that I was colluding with the medical team as they dug again and again deep into his flesh unsuccessfully hoping to find vein access. He must think I was doing the same to him as all those people once did to me many years ago. 

Those people who held me down and laughed at my terror were about 10 – 15 years older than me, and are now nearing retirement age. How many of them now hold senior, influential positions of power within the NHS? It terrifies me to think that some of them may have been the same people that treated Toby too, and I would never have recognised them or remembered their names.  

I thought all these awful times were behind us now, until I was diagnosed with cancer a couple of months ago. Occasionally in the intervening years I have had the odd blood test, and although panic-ridden and tormented by some of the ghosts of the past, generally I have held it all fairly well together at the time. Unfortunately I can’t anymore.

I can handle the cancer diagnosis. I can handle staying positive and upbeat, but I simply can’t handle the needles. Some dark door in my brain has reopened, and every time they need some blood or to give me an intravenous injection or run some drugs through my veins I completely go to pieces, and I’m back there, reliving terrible moments as if they are happening all over again. Rationally I understand, and I actually actively want them to do everything they can to get rid of the cancer and to get me well again, but I just can’t let them near me without sobbing and wailing like a baby. I’m that 8 year old little girl again, or that frightened young mother. I feel out of control and I can hear this terrible moaning sound like a wounded animal about to die in a ditch and I realise with horror that I’m the one making that noise.

No one has ever answered my questions because I’ve been too scared to ask. Can your veins actually burst and kill you? How can your veins cope with an additional volume of liquid without bursting? What really happens if a bubble accidentally gets into your bloodstream? Does that ever actually happen? What if your heart explodes? What if it is poison and not healing potions? Worst of all, how can they be sure that all your blood won’t just fall out of that hole they have just made in your vein?

My circulatory system is very personal, as if it is the actual “me” they are invading, my very soul.  There is something almost sacred about it,  and it’s attached to my heart, and if you bleed you’re in trouble, as I learnt as a very little girl, and I just can’t see a way of getting through these terrifying thoughts and actually letting them cure my cancer.

Interestingly, when I looked up “needle phobia” on google, very little comes up, and anything that is there is written by those who have never shared these terrors and simply don’t understand, but who think they do.  It’s a dark and shameful secret to have to admit as an adult that you are a big, fat, baby coward at heart, and health professionals, no matter how kind and empathetic and caring simply are at a loss to imagine why people like me behave as we do. People with deeply embedded needle fears would never choose to enter the medical profession, so none of the people paid to remove your blood will have any idea of what we are going through. Yet needle phobia is one of the most common fears of all, but most people are far to ashamed to openly admit to it.

Yesterday I came out of hospital after a mastectomy. The past few days have been horrific, not because of the operation, which I was totally fine about, not because of the post-operative pain which I coped with remarkably well, and even when they removed one of the drains, I hardly flinched. I am at home with another thick plastic drainage tube piercing through my flesh for several inches – that doesn’t phase me in the least.  It was the cannula in my hand which caused my torment and the intravenous antibiotics they had to inject into it for 40 minutes or so three times a day. I sobbed and wailed and went to the very dark places of my past in my mind and I just couldn’t deal with it at all. Every time I glanced at my hand I knew they had inserted a device that was keeping open a hole in my circulatory system, and it sent me into a terrifying downward spiral of despair each and every time.

Is it a phobia I have, or could it be some form of post-traumatic stress syndrome? One of the nurses I spoke to recently knew that my fear almost certainly emanates from something in my childhood, because with every other needle-phobic patient she has ever met this has been the case. Writing this is the very first time I have been able to share my memories about needle-related matters, and I can’t tell anyone out loud, because I would just sob so much in trying to explain that my words would be incoherent.

People often think that needle-phobia is hilariously funny, and immensely immature, and I am expected to  somehow “pull myself together” and be adult about it, but that is so hard.  Two nights ago I just freaked out and insisted they stop the intravenous therapy – I was in such an awful place I couldn’t take any more. I know full well that unless I can find some way of overcoming this blind fear, my cancer may win and I may die.  Everyone who suffers like I do finds it embarrassing beyond belief to actually admit to it, and no one talks openly about it, so that the health professionals who might actually be able to help in accessing effective treatments or therapies simply cannot do so, because people like me find it so hard to explain the reasons behind our fears.

Writing this has been one of the hardest things I have ever written, but I was so shocked that I couldn’t find anyone else who had written about it from first-hand experience that I felt a responsibility to do so. However, naming those fears, sharing the ghosts of my past and reliving those experiences with others makes me feel very frightened and vulnerable all over again, and I can totally understand why I may be one of the first to try and explain the origins of these fears.

I want the very best of modern medicine to try and save my life, and I can’t see how that can happen until I have somehow moved past all my ancient fears – and I simply don’t know how to even begin that process.  

One Boob Down

I’m home again after 4 of the very worst days of my life. Up until now I’ve been able to hold things all together and stay firmly positive and upbeat, but over the past for days in hospital I completely fell apart emotionally. My friends and family are all cheering me from the rafters, convinced I’m brave and courageous. Well the past few days has proved I am a total fraud in the bravery stakes. I was a blubbing, frightened, vulnerable idiot, making everyone’s life, both nurses and patients, much harder to cope with.

For the first time, I met and talked to several women with far more advanced cancers than mine, facing very depressing likely outcomes and coping with intense pain, and always with grace, humour and stoicism. These women still found the resources to reach out to me in my despair and offer me their compassion and comfort which I simply didn’t deserve.

99% of my trauma was a direct result of my needle phobia, and I have to confront this somehow and quickly, or I may reduce my survival chances significantly. I have written another piece detailing the causes for my intense fears, which I will publish as a blog as soon as this one is posted. It is long, and quite harrowing, so please only read it if you really want to.

I was admitted to hospital on Saturday, because of this wretched infection I had. Despite the 5 days of antibiotics, it was getting much worse, and the only way of sorting it out before mastectomy day two days later was intravenous antibiotics.  I learnt all this in the space of a rather difficult hour.

Mr Lovely, arrived at my bedside and told me that  I was definitely going to have to stay in hospital, which also meant no final outing in front of the world’s cameras for my boobs the following day at the Tennis Olympics. Then I was rumbled by Mr Lovely, who has been reading my blog, knows his new nickname, and has been teased all week about it by some of the nurses. Oops, I nearly died of embarrassment. Then, as if all that wasn’t enough to ruin my day, I went for a walk in the grounds with WM, and a bird crapped all over me. Fabulous.

However, Mr Lovely reading my blog hasn’t been all bad, because he was able to tell me I got it wrong. I don’t have stage 3C cancer, I have stage 3A, two increments less serious, and in his view, still eminently treatable. Yippee! In the great scheme of things, birds are allowed to crap all over me when I’ve just been given really hopeful good news concerning my longevity.

So on Sunday, my Dad went to Wimbledon in my place, and all day long everyone there was texting me so fast and furiously that I couldn’t keep up.

That afternoon 3 special people came to visit me, and really cheered me up, two good friends and my cousin.

Later I had a real treat when the whole tennis party arrived and texted that they were outside. It was gone 10pm but the nurses were so cool about it they just said go and have fun. So we sat in the now deserted canteen while I looked at all their photos, heard all their stories, and saw the tennis balls autographed by Andy Murray himself.

It wasn’t until Monday morning at 8am when it was decided that surgery would actually go ahead.  However, because of the infection, they didn’t do the portacath, because it has to be done when I am totally infection-free.

So it was a bit of a flat-spin panic to get everything done in time. I had to have a shower using the “people-bleach” pink stuff to minimise infection, then leg it over to Nuclear Medicine for a radioactive injection into the left breast so they can see the order of the lymph nodes on that side. Then rushing again to get back to the ward, and I was on my way to theatre just after 10am.

I woke up again in the recovery area about 2 hours later, and I was able to laugh and joke with the nurses, and even my oxygen levels were good. I credit the spiral-ball toy for that – I was off oxygen altogether 3 hours after coming around.

Then I got taken back to the ward, saw my beloved WM, and something just went horribly wrong in my head. I just dived head-first into some weird sort of anaesthetic-induced depression, and for the next several hours I sobbed and wailed long, loud and hard, and really tested poor WM to the limits. He is the most patient, caring, loving man I know, and I really don’t deserve him.

By early evening I was OK enough for my dad to bring two of the kids to visit, F and A. Both are so attentive and worried, although they are coolly trying not to let me see it, and worst of all, A’s fifteenth birthday was 2 days after my surgery, though in the end that was the day I came home, which meant that while his birthday wasn’t exactly the extravagant affair I normally try and arrange, he did have his mum there for most of it.

Then things progressed fine until yesterday morning when there was a false alarm about me, and for a couple of hours they thought I might be haemorrhaging internally, and I was prepped up to go to theatre all over again. It turned out to be nothing, and I was still allowed home, but WM came rushing to the hospital because of the emergency without bringing any clothes for me (the ones I had been wearing had been crapped on by a bird, remember?!), so I couldn’t leave straight away.

Now I’m at home, and happy, and feel much better than I ever thought I would so soon after this big surgery. I still haven’t really been able to take on board that I have a missing boob, but the little squishy one they’ve given me as a temporary spare is quite endearing, although I haven’t been brave enough to try it out yet. A friend earlier came over and spent the entire time stroking in on her lap like a sweet little animal, and my now 15 year old son was playing catch with it earlier, until I pointed out that it was a tad inappropriate to play with his mothers boobs at his age, which made us both laugh.

I also still have a drain in, a thick plastic tube embedded several inches into my body, collecting and removing all the blood-stained fluid into a bottle that looks remarkably like a rather good red wine, so you won’t be seeing me in Sainsburys for a day or two yet. Then there’s the whole business of sorting me out with more surgery to fit the portacath, before the chemo adventures can begin. Meanwhile, I have my own birthday in 10 days time, and wouldn’t it be brilliant if by then I’m ready to really party at least a little bit?!

Next week I’m off to see Mr Lovely in clinic again, to find out if the cancer has spread to the left side lymph nodes. If anyone remembers, please pray, or dance, or sing, or simply cross your fingers and think of me next Thursday afternoon, because I am willing with every bone in my body that the answer to that one will be a resounding “No it hasn’t.”!