33. Chat Room

This is my fifth attempt at a blog in the last two weeks, so please don’t think I haven’t been trying. Now, finally home, I am summoning together little bits of energy into a useful chunk that might actually allow me to finish. You wouldn’t believe how much energy it takes to a) sit upright to type and b) use both hands to type. I have to keep stopping to lean on one hand and continue typing with the other hand. And that is only these few words so far. Only a couple of thousand more to go then!

One of the problems with trying to blog from hospital was that, as my ever-so-carefully-monitored health was changing on a daily, if not hourly basis, anything I found the energy to write became old news immediately. Now from the other side of my twenty-three day stay I can give you a synopsis of the highs (?) and lows of the last two weeks and spare you the minute by minute pain of it all. Maybe I can squeeze all that into the book, which will rapidly be approaching doorstop dimensions if I carry on like this! Reading back over the blogs I had started to write, but run out of energy to finish, it all seems like such old news; my exuberance at coming through the process so well and apparently unscathed was totally undermined by the high temperature ‘spikes’ that followed, the best one of all being 40.2 degrees C. I looked that one up as I still work on old money for temperature, and was astounded to see it is about 104 degrees F. No wonder they got a bit excited. My Hickman lines have now come out – yes! – as they were a possible source of infection, but the best thing of all about that is that I no longer feel like one of those budget aliens from the early days of Star Trek, with spurious wires coming out of my skin.

The twenty-three days split neatly into Days 7 down to Zero, and The Rest, during which anything could, and did, happen. From about Day + 3 I was neutropenic, which apart from making me feel absolutely rubbish also meant I was absolutely definitely confined to quarters. I was starting to get some serious cabin fever after over a week of gazing out over a sweet little lake and tantalising views of the balcony. I don’t care if the weather was horrible, I wanted to breathe it and experience it for myself just to know it was so. By the following weekend there was the promise of me being able to go outside, and here are  a couple of pictures of the terraced area at the end of Ward 11 that kept me going. It doesn’t really look anything in the photo from my view, but the balcony goes way round to the right hand side. There is some nice patio furniture and plants.
Big Balcoony

Balcony

 

The far side of the balcony looks out over the lake, and I could see a tiny bit of it from my room. I don’t think you can see it on the picture, but it is a really pretty scene. The sun rises directly behind the blue portakabin and I witnessed some truly spectacular sunrises in my time here. I got Stephen to bring in my yoga mat and I was speaking with great excitement of doing my yoga practice facing the rising sun, on the summer Solstice.That was silly – plans again, see? And they laughed….. Come the Great Day I was feeling very far from celebrating anything, especially if it involved moving.

The isolation part is so weird.  I was so lucky to have access to the world via mobile etc. but during isolation I was totally reliant on whatever people are able to take out or bring into the room. The fridge idea was brilliant. We pitched up with smoothies, juices and waters, and quickly added some ready meals, milk and whatever else I happened to fancy. Being able to make my own cafetiere coffee made a massive difference as it was one more familiar taste or routine to make me feel at home.

Food was, of course, a battle ground. Well that isn’t entirely true – the food was there, it’s just that I wasn’t prepared to eat it. Stephen brought home cooked food in for me during the first week, then for several days as I hit the low part of the process I couldn’t face eating anything; my appetite came back before the temperature spikes hit and  I wanted to make up for lost time! Access to the ‘Special Menu’ was only via The Dietician, who, despite repeated requests from the Ward had failed to materialise apparently on the grounds of being ‘very busy’ and also that I wasn’t yet malnourished enough to be worthy of a visit. In the beginning I was interested in talking to her because of the absolute mess that the food and the menu is in – but it had now got to the point where I just wanted a cooked breakfast and she was the only way to get it. More requests from the Ward and then finally a look alike from a Vogue catalogue came in and announced she was a student dietician and her mission was to see how the hospital could help me to increase my weight by providing some more varied food. Sweet. She knew all about my thoughts on hospital food. Clearly the feedback form did actually get fed back and they must have figured that the best way to deal with it would be to send in a newbie so that nobody with a fully paid job had to come to dscuss things that couldn’t be changed anyway. And it worked really well. There have been many surprises in these last few weeks and this was one of them. Far from being a newbie without a clue, Chrissie was a bright, engaged and engaging student who is obviously headed for far greater career vistas than anything the NHS have to offer. Or at least I do hope so. She completely understood the reasons I eat the way I do at home and what I was hoping to achieve when I got out of there. We had a good chat about no carbs, the 5:2 diet and other areas of interest, and jointly came to the conclusion this stay was more about survival tactics than anything else. I discovered that the dietician’s role in the hospital is to find creative ways with very poor products to tempt underweight patients to put on a bit of weight. Very much along the two scoops of ice cream, extra butter on your toast kind of thing than any chance of improving what is sent up. She didn’t have access to anything more exciting on the menu than I already knew about but she swiftly offered to order me bacon and egg for breakfast. After days and days of Readibrek I was so ready for that. Which is just as well, because you have to Ask For It To Be Stopped if you want a break, and that of course implies that you would also have to Ask For It Again if necessary. So the following morning the cooked breakfast materialised, bourne aloft by Maitre d’Dot and I did manage to eat a few mouthfuls of it; I was shocked at how my appetite had shrunk.

By far the weirdest thing about isolation is the way your words are taken out of the room by the people that come into it. From my perspective, I was gently asking little questions like, how do I get access to a reflexologist in here, and can I stick a sign on the door so that I’m not disturbed for a bit, to get some meditation in? Small conversations with nurses about their lives, their hopes and dreams – little bits and pieces that make the world go round, that we don’t usually give a lot of attention to. What I was in no way prepared for was the way in which this spread like wildfire out on the nurses station. My room suddenly became a kind of ‘chat room’, a safe place for the nurses to retreat to when the going got tough outside. My interest in complementary therapies became big news in a way it hadn’t with my shorter stays, and even the doctors were coming in to talk about it. One of the massive side effects of the Mephalin is that it destroys the gastro-intestinal tract – literally. What you are left with is a gooey, disgusting mess in your mouth which is a million times worse than the worst case of thrush you have ever had. Think Jabba the Hut, all the way down to the exit point. I had been told I could have loads of different mouthwashes and painkillers, even a morphine pump if necessary as I would find it almost impossible to swallow. I rejected the mouthwashes from the outset as they were loaded with saccharine and flavouring and said I would manage with a saline mouthwash. And my secret weapon, Vitamin A drops. These have prevented any mouth issues whatsoever throughout the rest of my chemo and I was hoping they would bring salvation now. And they did in spades. The worst I had was the Jabba the Hut mouth, which was deeply unpleasant, but absolutely nothing like as bad as everyone expected. This in itself created a stir as it has never happened before. A group of doctors came in one day in a bizarre combination of ‘show and tell’ and ‘I told you so’. I duly exhibited my ulcer and sore-free mouth (again) and the senior one looked really baffled and disbelieving. It is strange to observe a hospital consultant faced with something she doesn’t really want to see. Two of them were grinning like Cheshire cats, as they had an idea of what was about to happen, whilst the third was struggling with the very obvious proof that something outside the system had prevented me from the biggest issue that crops up after stem cell transplant. I was having a stronger day so I decided to tell it like it is. I seized the little bottle of Vitamin A drops off the fridge and waved it under her nose, saying, “I’m not presuming to tell you your job (brave!), but this is all you need to do. You shouldn’t be having people going through such pain that they need morphine pumps, when 1 drop of this a day will stop all their problems. Don’t do complicated research, you can see it works. Don’t even ask them, just give it as part of their daily meds. Easy.” Gulp. My partners in crime beamed at each other. One suggested using their slush fund to get some, the other said she was just going to go across to the Nutricentre and buy it anyway. Don’t know whether they did or not, but it was a splendid moment.

What became apparent during my stay is that there is a huge gap between what the nursing staff (the jury is still out for the doctors as shown above), want to provide for their patients on a more complementary basis and what is available – and there is a massive discrepancy from area to area and even between hospitals within the same county on that level. My desire for a reflexologist really opened a can of worms on this point. Several of the nurses had trained at Poole Hospital, which although the letterhead would lead you to believe otherwise, is a different Trust with a separate budget. At Poole Oncology unit, reflexology and aromatherapy massage are offered free as a service to patients, supplied by the MacMillan unit, which is based at Christchurch Hospital, where it is also offered free. But it isn’t offered at Bournemouth. How nuts is that? One of the nurses knows the reflexologist so was able to put us in touch with each other, and I paid for her to come and give me a treatment. Which was fabulous, but I shouldn’t have had to jump through hoops to sort it out for myself. Several of the nursing staff were sufficiently annoyed by my battle they they are thinking of doing special projects  to show how important complementary therapies in patient recovery. I suggested to them that they use the success stories and experiences of other hospitals that already offer these services rather than try to re-invent the wheel and try to prove that the therapies work. That would be a complete waste of time; The Royal Marsden, St, Barts, countless other hospitals have already done the legwork. This battle appears to be about getting someone with budgetary control committed to this level of care. I would imagine it got lopped off the budget at Bournemouth simply because the person doing the budget wasan’t interested. Sorry, Bournemouth hospital, not good enough. I am immensely heartened by all this. Several of the staff are really committed and have asked me to stay in touch so give a hand with their projects. Their enthusiasm has also enabled me  – mentally at least – to fit the final piece in the puzzle between allopathic and alternative medicine. This has previously been a battle between the two in my head, and what this whole six months has shown me is that the two disciplines can work together. I am proof of that, so from now on I consider everything outside of ‘science’ to be ‘complementary’ rather than ‘alternative’. There doesn’t have to be a choice – I didn’t have that luxury, and this is about taking the best of both.

So – I did eventually make it outside, and spent some lovely time talking to  couple of other patients on the patio. Unbelievably, my story had also reached them from my little isolation suite, which was almost embarrassing. To think that the nurses had carried my story not only to each other and the doctors, but to other patients, was humbling in the extreme. I think it has given me a pretty good direction to follow in the coming months. My recovery is going to be exceedingly slow, but I have lots to occupy myself. I am fascinated by the way human beings cope in situations like the one I have just been through. To be violated from the inside out by the drugs and the outside in by the medical processes leaves one feeling totally open, psychically, spiritually and emotionally too. It was in those deepest, darkest and most uncomfortable moments when I was completely alone that I started to wonder how I held it all together. I will have much to meditate upon as I regain my strength.

 

Be well and enjoy the sun!

Mxx

 

 

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About Margaret Cahill

After diagnosis of Mantle Cell Lymphoma in 2013, I started this blog to stay in touch with friends, family, and and an ever increasing network of lovely people who sent me healing. The readership increased and I ended up blogging for all I was worth to try and stay sane through the chemotherapy and stem cell transplant. Then after I went into remission (thankfully) I was enjoying the writing so much that I have carried on, and the blog seems to have become a bit of a resource for people, which is lovely. The original year of blogs have now been made into a book, Under Cover of Darkness: How I Blogged my Way Through Mantle Cell Lymphoma. It fills in a lot of the gaps between the blogs, and the tone falls somewhere between graveyard humour and explicit details of chemo treatments. I do hope you enjoy it :-) Mxx
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3 Responses to 33. Chat Room

  1. Sue J says:

    Margaret, I think you are just..brilliant.
    Just as Mrs Bennett felt her daughter Jane couldn’t be so beautiful for nothing, I felt you couldn’t be a publisher specialising in Mind Body and Spirit (even before Stephen and his connections were factored in)… that you couldn’t be such a vivid writer, and go through such a ghastly set ot procedures, leading you into the Valley of Death and out again…. all for nothing.
    Most definitely all this was surely in place for something. Having faith in natural (specifically non-pharmacological) remedies and palliatives, pulling out the energy to stay pro-active, using yourself as a Guinea Pig – but I doubt it seems like that – continuing with your blog when you are scarcely strong enough to type, will result in your book – and further paths will open …in the challenge for a general change of attitude among Medics, significantly the GMC. You are so right about the need for all ‘Healing Schools’ (my term) to work in tandem.
    Love Sue xxx

    Like

  2. Iris Horsey says:

    I have to agree with Sue J. There has to be a positive reason for accomplishing all this and writing about it.

    Like

  3. Caron Rogers says:

    Fascinating reading & I’m very impressed that you are making a stand & hopefully improving the lot of others who will be at the receiving end of similar treatments. Cx

    Like

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