66. Life in the Real World

It’s only periodically that I leave my somewhat closeted environment to venture into uncharted territory, and then I realise I do in fact live in a closeted environment. I guess it has become second nature since the chemo and stem cell transplant, and especially with this being the flu season an’ all, we don’t tend to go to busy places that heave with contagious humanity. Not that humanity is contagious, just that their coughing and spluttering without putting their hands over their mouths is. And for this very reason I always wear a scarf – so that at the least sniffle I can cover my mouth and nose, and head in the opposite direction. Honestly, there is a point to all this – just hang on in there. So, apart from the doctor’s surgery, where do you think would be the worst place to pitch up? Hospital? Yes. Now why, having spent an awful lot of time in the des-res suite of Royal Bournemouth Hospital during 2013, would I want to go back there? It must have been bad, and oh yes, it was.

In my day job as a publisher I am lucky enough to be able to choose between two types of RSI: being right-handed, I can easily overdo the action in, say, 5 hours straight editing and typesetting for several consecutive days and get a massively painful hand. So to give myself a break and a bit more movement occasionally, I pack up books from our stock to fill the orders for our main wholesaler. As we have over 60 titles in print that can equate to a lot of rummaging in boxes with my left hand. Fortunately I have a game plan to sort this out shortly, but for now, suffice to say that is enough to cause my left hand to have an RSI tantrum. Not surprising really. Pick about 4 books off your bookshelf at once with your weaker hand and carry them over to a table, oh, about a dozen times. Or pick one and go backwards and forward 48 times. You will notice most of the weight is taken by your thumb joint, and it will start to ache. If you took the second option, your legs might too. So I have noticed that, post chemo and SCT, my joints are much more painful – something I am researching right now. However, a few weeks ago my left hand decided it really had had enough, and after a monstrously painful and restless night when I just couldn’t get comfortable, I realised it had swollen greatly and hurt like hell, almost as if I had broken it. I realised that I didn’t really have any other option than to go to A&E; my post-transplant body is a whole new terrain, a bit like a friend that you’re not sure enough of to tell a really filthy joke to. I know that osteoarthritis and osteoporosis and basically any kind of osteo or arthritis could be a risk, as could be my bones thinning. I knew nothing about any of it, just that I was in so much pain I couldn’t even speak, which is very unusual for me. More of that later. I mean I really tried. I’m not one to give in easily, but my usual remedies had failed – arnica, of course, both gel and tablets, homoeopathic phosphorous, ice packs – so as Stephen was on the magazine deadline, lovely number 2 son Matt took me to the hospital.

I was seen in triage after about 15 minutes where I collapsed into a sobbing little heap with the pain, so the lovely nurse dosed me up with ibruprofen and paracetamol, then sent me out to wait for the doctor with the proviso I could have more pain relief in 15 minutes if it wasn’t any better. It wasn’t so I got codeine too. The pain was about the same as my frozen shoulder when I was in isolation. In fact in between the waves of pain, I amused myself while I waited for triage by wondering whether to give it an eight-and-a-half, or go for nine when they asked, which was half a point below the score for my frozen shoulder. In the end I decided on eight-and-a-half on the basis I could keep the nine back for emergency use should it get worse. It did, which had a lot to do with me not speaking later.

Once I got to see the doctor it all seemed to get a bit serious. He said he thought it was septic arthritis, which I hadn’t even heard of, and that I was now a medical emergency and needed to be hooked up to antibiotics immediately to save any damage to the joint. Eek. Any kind of inflammation is very bad when it appears in the same sentence as a cancer history, so I was pretty eager to get started. The nurse did her ‘nasty little scratch’ act and a cannula was inserted during which time the doctor decided I needed to go to Poole Hospital, where the orthopaedic consultant was already waiting to see me – completely unaware that it wasn’t his A&E I was waiting in – and I would be staying overnight for observation. For the astrologers amongst you, it was the tail end of Mercury retrograde at that point, the knowledge of which only just helped to keep me sane. Matt had by this time gone to get Stephen and to dust off my overnight bag so I was left without transport to get to Poole. Fortunately I was downgraded from the blue flashing lights to a taxi, which was called (and paid for!) on my behalf by the hospital. I love Bournemouth Hospital. I left with one arm in a sling and a bandage protecting the cannula on the other, and very strict instructions to report straight to the reception desk at Poole and wield the letter, which would explain the situation. I would, theoretically, be whisked through like magic and hooked up to the joint-saving antibiotics. The pain relief was beginning to wear off at this point so I was starting to get a bit tetchy.

I’m not going to draw this out longer than it needs to be, so what happened is that I pitched up at Poole, waited to see triage, who I didn’t need to anyway as I had been triaged already (but on the plus side she gave me more pain relief), waited more than the two and a half hours advertised to see the doctor, went up to the desk quite a few times to ask what was happening, and considered upgrading the score of the pain again. It was a busy old time, during which Stephen appeared, which was very welcome as I had run out of tissues at that point. We finally got to see a lovely registrar who wasn’t convinced it was septic arthritis and didn’t want to flood my body with high dose antibiotics if she didn’t need to, so I relaxed down to Defcon 1; the pain was at about a six so I was bearing up until she said she wanted to aspirate the joint to check there was no gunk in there and that local anaesthetics didn’t really help so she would just go ahead and do it without. Wooooaahhh! That didn’t sound good. Aspirating means sticking a hollow needle into the joint and seeing if it sucks anything up. Much like a bone marrow biopsy, of which I have had two, and they hurt. A lot. And by this time we had been joined by someone who had the empathy of a brick and – to put it gently – very little grasp of the language, whose job it was to be asking me questions like ‘are you allergic to anything?’ for the umpteenth time just as the registrar was plunging the needle into the inflamed bone. I really, really wanted to tell him to **** off, but I was well brought up, so I just gasped, “Can’t talk”, to which the registrar replied to him, “No she isn’t”. SO WHY DID HE ASK ME?! AND WHY THEN?

I had forgotten just how disempowered we become in such situations – I obviously have a very short and selective memory. The fact that he also managed to turn ‘stem cell transplant’ into ‘bone graft’ then proceeded to ask me where the bone graft was defies belief. And I was rude then, but it didn’t include the ‘f’ word so I am quite proud of myself. Aaargh. The registrar confirmed that I would be staying in overnight for observation, the very slight hitch being that there weren’t any beds, so along with several other people, some waiting in their onesies and fluffy slippers, we were returned to A&E where my ever present scarf was put to good use.

Now, when they said ‘observation’, I had forgotten (selective memory again) that it is a two way process, and to be honest, I have sort of missed the opportunity to relay all this stuff on the blog. It is such a huge amount of fun watching the characters emerge; the Universe clearly thought so too, but, just for the record, I don’t want any more, OK? We had missed food time (gutted, obvs – that bit I haven’t forgotten), but Stephen had thoughtfully brought my very favourite Kettle Chips, as well as other treats, including an apple and some water and loads of books (bless him) and all the paraphernalia we used to schlep back and forth with when I was in chemo. We tried to eat a few crisps very quietly while we waited in A&E for the bed to materialise (do they really discharge people at night?!), then decided, as the hours wore on and the clientele checking in were becoming slightly less aware of their surroundings, that the hunger was too great and we threw consideration to the wind. We were interrupted mid-crunch by the news that the bed was ready in the observation ward, just up the corridor. That should have been a clue.

More paperwork, allergy questions, blah, blah, blah and a blood pressure check. D’you remember my battles from the early blogs? I have the kind of blood pressure that hits the roof at even the sight of the monitor – although not at home strangely – so I was ready for them. I fielded questions about my usual blood pressure, explaining I was still in a lot of pain, and escaped for the night into the sacred area around my bed.

I have to say I was spoiled rotten when I was in isolation at Bournemouth Hospital; my own ensuite, meals served in my room, endless hot drinks, relative quietness. Slow everything down, delete several of the services, add nurses talking at full volume outside the ward all night, and you have a potted history of my experience. The pain got really bad again in the wee small hours, and they gave me some liquid morphine, which allowed me to drift blissfully a long way from their banter.

An observation ward is an incredibly interesting place; my morphine experience left me with a really dry mouth, but otherwise in much better spirit come the mornings, so I was eager to find out more about my neighbours. Unfortunately I still had the unused cannula in one arm, and although the swelling had reduced somewhat on my left hand, I wasn’t able to get dressed alone which was annoying. I wanted to be in my own clothes for the forthcoming ward round but the nursing staff were up to their eyes in new admisssions. So I sat on my bed in my pink pyjamas and read ‘The Woman Who Would be King’, a biography of Hatshepsut. Note to Judy Hall here – what is the link with me and Egyptian history when I’m in hospital? Interesting that. Anyway, the orthopaedic consultant appeared, decided it was just inflammation and my blood tests didn’t reveal anything more sinister, so I could go home with some lovely drugs to make it all better. He also asked if I had any GI problems. Well, yes. I told him that the stem cell transplant destroyed my GI tract which I have been busily building up so I am extremely fussy what I put into it. And I did say that, honestly. He grinned and said that as the anti-inflammatories he was giving me would ‘ inflame’ the gut – WHAT ARE THEY THINKING?! – he would give me Omeprazole to protect it. Which, as we all know from the early blogs, gives you raging stomach ache. And liquid morphine and paracetamol. Well they would do for the store cupboard, but the rest would go in the bin as soon as I got home. (Fortunately the blood pressure issue didn’t come up again thanks to a nice nurse who believed me when I said it was usually fine, it was just the hospital experience that was sending it up. Too right.) What a lovely man. He told me to come back in a week for a check-up then exited the reception area of my bedroom :-)

I managed to get dressed with the help of one of the health care assistants and set about talking to my neighbour opposite in whom I was especially interested. She was on ‘nil by mouth’ as she had some intestinal problems and had been on a nutrient drip since Tuesday – so several days by that point. Poor thing. I had heard a few muttered things from her consultant, including words to the effect of ‘we are dealing with the worst case scenario’, which of course to my biased ears sounded like she had joined my club, hence wanting to talk to her. Plus, she had been worrying non-stop about getting all her tablets. She was especially concerned that she wasn’t getting her Bisoprolol (I know that one!) in the evening as without it her blood pressure would rise overnight then there was a danger that her Ramipril (Stephen knows that one) wouldn’t be able to lower it in the morning. And if she didn’t take it before her statins (Lyn knows that one) and her Thyroxin (don’t know anyone with that one) the whole tea party would fall apart. Jeez. A lovely lady but very anxious, which I’m sure wasn’t anything to do with all the drugs she was taking. After a bit of a chat it turned out that the ‘worst case scenario’ was that an operation the previous week to remove a blockage in her oesophagus caused by her being given too high a dose of Thyroxin had perforated her gut, (are you keeping up?), and another operation would be needed to insert a stent. We had to stop there as the nutritionist arrived to talk to her. I do hope she is OK.

I didn’t manage to talk to the lovely lady in the bed next to mine after all; I gathered from the conversation on the other side of the curtain that she was discharged early on the basis that the Raprimil she was taking had reduced her blood pressure to the point where she was falling over. So they concluded that stopping taking the medicine would stop her falling over. Wow :-)

So excitement over, I am now sorting out my diet (again) to avoid anything which might cause inflammation. I have just updated the ‘Recipes’ page on the blog to reflect my new status as ‘no deadly nightshade family by mouth’ and am working through the suggestions from the lovely Manisha (see Vitamin A drop blog #3) to calm my joints down. I have also ordered some interesting things that I will write about next time. Once the scary bit was over I resorted to arnica, ice packs and a wrist support, and my wrist is back to normal, except all my joints are a bit whingey. I am researching further and will report back. Meanwhile if anyone else is suffering in a similar way post chemo I would be really interested to hear from you.

This has been such a long blog – hope you managed to see it through to the bitter end.

Wishing you health and happiness

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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2 Responses to 66. Life in the Real World

  1. Jot Tomsic says:

    Hi Margaret. Sorry to see some of the issues you’ve mentioned. Like you, and as I’ve communicated earlier, I did the program similar to yours so I guess you can say I, along with thousands of others, know the story. I wanted to let you know that, after all I went through, I was then diagnosed with chronic hemachromatosis which is extreme iron overload. Normal is 75 and I was at 4300. I went through a phlebotomy program and got down to normal. It turned out I inherited the genes that caused all of this ………..maybe even being the cause of the mantle cell lymphoma and, definitely, the cause of a lot of the aches and pains and other conditions I have. You can google sites to learn more about this and I just wanted to suggest that you get the simple serum ferritin blood test to see if you have this. Hope things go well for you.
    Joe

    Like

    • Hi Jot,
      This is really useful and something I will bring up at my next appointment, in about a month. It’s a strange new world after transplant, isn’t it? None of the old rules apply and there are lots of new things to consider. Many thanks for getting in touch and I hope all goes well with you now.

      Like

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