September is always blood cancer month. It seems apt that my body decides to give me a reminder of how fragile my health is at times. You may remember I had a couple of fairly good weeks and was able to significantly reduce some of my medication. This pleased me no end. Then I gradually started to feel crap again.
I was in more pain than usual. My hips are awful and really ache. My wrists jolt me every now and again with a sharp pain. Same goes for my ankles and knees except they also really ache.
Then I started to have pains in my stomach and my appetite was lessening. This soon turned into a mega vomit of undigested food. The vomiting went on and on. At one point I was being sick every 2 hours throughout the night. In the end it was just dark green bile. I felt dreadful. I couldn’t eat. I couldn’t really drink and I virtually just slept for 24 hours.
I gradually started feeling better but still have bad muscle and joint ache. My Reynauds Syndrome has started up again. My skin is also incredibly itchy to the point that wearing shoes and socks is a challenge as they irritate my feet and make them itch.
I would’ve never believed that an itch could be a medical problem. My partner was giving me a shoulder massage as my shoulders were hurting and I had a headache. It felt really nice at first and then all of a sudden the itches started where my back had been rubbed. It was like a tens machine had suddenly come on and was buzzing with loads of fire ants all over my back. It was AWFUL. It was an hour before we managed to calm it all down and I could sit still once more.
I try to not scratch when I’m awake but is really hard not to. I do pinch, slap or rub the itches. I also fidget and tap. I’m normally such a still person that people often look at me sideways. I have loads of different lotions and lots of medications for this problem. When it’s having a flare, it seems nothing much helps.
The vomiting has stopped but I still get a lot of reflux. This goes on day and night. Last night even though I was sat up, I kept waking up with acid from my stomachs in the back of my throat. It makes you cough and sometimes choke. It also tastes awful and burns.
When you have cancer and have had such serious and extensive treatment, it seems your body is never quite the same afterwards. It’s so difficult having to adjust to living in what I feel is a 95 year olds body. I just hope that 95 year old is having fun with mine.
My appointment with the haematologist went well in as much as most of my blood results were good. There were a couple of tests that showed something had been or was going on. My neutrophils and CRP was raised. They couldn’t, other than that, work out why I had taken so many steps backwards and had such a rough time.
I also saw the lovely new physio. I explained to Shana that I hadn’t been as diligent with my exercises due to feeling unwell and also a possible slight groin strain. She was ace and totally supportive. I also explained my mobility scooter had broken and she said Macmillan might be able to help pay for it to be fixed. I’m not so sure as I’ve asked for help from them before and even though my partner receives the state pension and I’m on ESA we have too much coming in! Pensioners have it hard when it comes to looking after disabled partners. If you receive your pension, it means you can’t claim carers allowance even though all the care you give to your partner saves the NHS and local authority loads of money. It’s just not right.
As well as seeing the lovely Shana I also caught up with the equally lovely Katie who is the dietician. I’d completed a food diary for it but she only received 2 of 7 pages. She was good about hearing what I was saying and put no pressure on me to push more in while I was recovering. We can see more about where I’m at next month.
At present we have some fairly nice weather. That means I can still see friends and family because I can sit out in the garden with them. Heaven only knows how I’m gonna get through the winter. I’m thinking about getting an awning to protect from the weather. Then I can put a patio heater underneath it. Has anyone else done this? Is it expensive?
Yesterday I had a lovely time. My older sister and brother and their partners came over and we sat outside for hours. These are 2 of the 3 siblings that I met on the TV show Secrets in my Family. This is the link and password to the show should you wish to see it.
https://fmebrandmanagement.box.com/s/3hz6o4ge1drxg5evx2aswqskba65e2bp
Password: sft17
I’m so blessed to have met them and for us all to find healing from the challenges our different childhoods had. Thank you Sandra, Linda and Russell for welcoming me, Gail and Dawn into your lives. I’m so pleased I was brave enough to find you.
One of the things that’s been nice in between my last blog and this one is that I was able to take a funeral for a family that I did another funeral for just before lockdown. It was hard not to be able to do some of the things I would normally do but it was also good to be able to be alongside them through another family bereavement. Funerals are still being kept to a limited number of people. In this case it was 20 people. This means an awful lot of people can’t come. I suspect we will end up needing to have lots of memorial services in order to give others the chance to say goodbye.
As I sit here and write this I have an awful pain under my ribs. I also have a bad ache in my right calf. My hips are on fire. My left ankle aches. My back, arms and torso is very itchy. My mouth is so dry that my lips sometimes stick to my teeth and my tongue sticks to the roof of my mouth. My eyes are blurry and sting and are very dry. I also feel very bloated and nauseous. The list of things we have to put up with is endless.
Sadly because of not being so great I’ve had to go back on some of the medication I got off. It’s always a rollercoaster and I never know when I’m gonna have one of these dives. It can make planning for anything in advance difficult. However it doesn’t stop me planning because it’s always good to have goals and dreams.
In my last blog I mentioned how worried I was about my eyes. Having been to the optician after suffering a very brief incident of partial blindness, I was told by the optician that I had moderate cataracts in both eyes and dot haemorrhages at the back of my eyes. I take most things in my stride. I have dealt with my mortality and death holds no fear for me. I’m lucky that I’m not often stressed and I’m not a worrier. When it comes to my eyes though, I am more cautious. The reason for this is I only have one eye that works. My left eye sees light and dark but even the large letters on the sight test are now wiggly blurred lines that I can’t make out.
I asked my GP if I could go to Moorfields. The medic that phoned me about it was not someone I knew. She questioned me and was quite abrupt, initially she was saying I didn’t need a referral based on what the optician had said. I told her about the episode of temporary blindness and she said “you didn’t tell me that” to which I replied “you didn’t ask” I’m so used to dealing with medics who know me well and know I wouldn’t raise something unless it was a real issue. In fact I’m more likely to put up with it for too long before I mention it. This woman wasn’t very empathetic and seemed a bit miffed at having to do the referral. It’s a shame but maybe she was just having a bad day. She did refer me and Moorfields were great when I finally got to the right place.
When I arrived I went into the main building, then after queuing to get in, I was sent to another building over the road. After that I was sent back to the original building and had to queue all over again. When I got to the front of the queue I was told I couldn’t come on till 3pm as the letter said my appointment was 3,30pm. I explained I had received a call from the doctor asking me to come at 1pm. The man on the door said he had to go by the letter and wouldn’t listen to me or my partner. In the end another member of staff let us in. Two things are wrong here. Firstly no one should be sent to the wrong place, yet alone someone with a mobility problem. Secondly staff should listen to what the patient says to them. Why would anyone turn up 2.5 hrs early for an appointment? This just shows that not everyone has caught up to the fact that patients have a voice now. It’s also why we need patient advocacy for those who are not as assertive as I am and need some help navigating a confusing system.
When I got to see the doctor she was lovely and reassuring. She explained the cataracts would need doing but not just yet. I said that’s what concerned me because I know it’s a straightforward procedure but with my wonky immune system, the chance of infection is higher. She said not to worry and they would take good care of me when the time came. She also said that whatever the optician had seen was now gone and the haemorrhages had been reabsorbed. I was relieved by this but also slightly perturbed. If I could afford to pay for it I could have cataracts surgery now. Instead the NHS says I have to wait until the symptoms start getting in the way of my quality of life. How annoying is that! I don’t do private medicine. I think it’s wrong that if you can afford it you get treated ahead of those who aren’t so fortunate. It’s just not right. Oh well, no point having principles of they don’t bite your bum from time to time.
Thanks everyone for continuing to read about my exploits and recovery from cancer and a transplant and it’s complications. If you have any questions or comments for me I will happily answer. I appreciate all your messages and virtual support. It helps to keep me as sane and cheerful as I am.
I also remember all the others I have journeyed with who sadly never made it. As it’s blood cancer awareness month, I would like to dedicate this blog to all those brave souls.
