It’s been a while since I’ve written a blog. This one will be meaty because so much has gone on. Sometimes it’s hard to see things for what they are when you’re in the middle of it all. Hopefully writing it all out will help me to continue to process life, the world, the universe and what you do when it seems life is ganging up on you and winning.
I have four beautiful grandchildren. The three boys are all over 6 foot. The youngest of these is 15. He thinks he is a man as he has a man’s body but those of us looking with the aid of perspective know that he is still a child. The following saga unravelled on a day where myself and my long suffering partner had just sneaked away for a few days break in my cousins granny annex in Nottingham. We were just relaxing and catching up when our daughter rang really very distressed. It turns out that this young grandson had been set up by a former girlfriend and he was beaten up by her brother and 3 of his mates. These 4 men jumped out of a car wearing balaclavas. They stamped on him and stole his very expensive trainers. They were disturbed by someone coming out of a nearby house. This poor woman called the ambulance and police. She thought my grandson had been killed as he was so still. She was very relieved when he moved his head. She took him into her house bleeding and crying. That woman is owed a huge debt of gratitude. I hate to think what would have happened without her intervention.
When something like this goes off uninvited in the middle of a family, everyone is affected. It’s not just the person in the middle. The ripple effect means parents, grandparents, siblings, aunts, uncles, cousins, friends etc all become caught up in it. It takes reserves and resilience to work through it all. It’s important that the anger and fear have a voice but it’s also important to try and be objective and reasonable.
As a family we have many resources we can tap into. We are fortunate in that respect. Despite all of that it seems there will be no criminal charges because the police didn’t gather enough evidence. This whole experience has made us realise how decimated the police service has become and how ineffective their communication systems are. One of the officers did a good job but despite all this, it seems the criminals will get away with it. In the meantime we, as a loving family, gather around each other and support each other.
The next thing to come my way was that I had an MRI of my hips due to some increased pain. I hadn’t had the results of this when I had an appointment with the pain consultant. That appointment was to give me a trigger point injection into my sore and stiff neck. I’ve been complaining about my neck for ages. It’s often got knots in it that radiate down my shoulder blade and over my collar bone. At times it’s becoming a quality of life issue. While the Dr was preparing the injection she also checked the MRI as I mentioned I’d had it. She told me a small area of avascular necrosis had shown up in my right hip. This is not good news. It means that the steroids I’ve had to take over the years have caused a bit of my hip bone to die. It will eventually lead to a hip replacement. I was a bit shocked about this on one hand but not surprised on the other. I had my injection and went home to digest the news.
It’s so important to give yourself time to process these things that come along unexpectedly. Sometimes just sitting with it and letting it wash over you is a way of becoming acquainted with the latest challenge.
The following week I had an Aclasta Infusion. This is because I have osteoporosis, again caused by all the steroids I’ve had over the years. The osteoporosis consultant had delayed the infusion by a month as my calcium was a little low and she wanted to boost these levels as they help with the absorption of the infusion.
The infusion is given via a drip once a year for 3 years. This was to be my 3rd dose. I’d not reacted to the other 2 so had no worries. The next night I woke up shivering and with a temperature. I threw up and had the most painful neck spasm I have ever encountered. I’m quite stoical and don’t show my pain externally. This was so excruciatingly painful that it made me yelp and cry out loud.
I contacted my wonderful haematology team. They got me in and prescribed a short course of diazepam. This wasn’t quite strong enough. Then my wonderful haematologist and rheumatologist made a joint appointment to see me. This coincided with the junior doctors industrial action. I fully support all the medics in their protests. I can see with my own eyes how badly affected the NHS is by serial underfunding. It’s not safe at times now on ordinary days. Something needs to change. The consultants are often 100% behind their colleagues and they run the wards in their absence. Despite all that going on these two wonderful women and a CNS gave me their time and wisdom in looking into what was potentially going on. I was prescribed a different medication and once that was at the right level it began to have a benefit to me. They also organised an urgent MRI of my neck. How amazing is that!
The MRI showed ongoing wear and tear changes. Also the previously seen neck fraction and upper back fracture. There was also a rib fracture too. There is nerve compression due to the collapsing vertebrae as well as a shift apart creating a bit of a step on the vertebrae. It’s no wonder it bloody hurts.
It took me 5 weeks of lying propped on my couch before I could try my own bed again. It was the only was I could get comfy. My poor long suffering partner had never seen me like it. I never just lay still. I awkward try and do something even when I’m very weak. Once, when I had pneumonia it took me 45mins to make my bed. I was determined to do it. This neck pain was off the scale. I couldn’t concentrate. I was still throwing up. I couldn’t drive and my infection and inflammation markers which should be below 5 had jumped to 170. I felt bloody rubbish.
I was given ongoing pain meds and regular appointments to keep an eye on me. Victoria, the haematology consultant was very close to admitting me. My weight was still not good and I was just getting frailer and weaker.
I normally do all the driving as I like to and my partner likes to be driven. It was hard to have to rely on her and see her getting stressed at some of the traffic conditions as we made our way through London. She also had to listen to me wincing every time we hit a pot hole or a speed bump.
On one of these check up days we got in the car and Maggie said to me “where’s your bike?” Regular followers of mine will know I recently got my 125cc scooter back on the road. I’d only ridden it a few times when something made me think again. I went to go in the bathroom and caught my arm on the handle. This caused my fragile skin to rip and flap backwards. I knew it would be foolish to keep riding the bike with skin that rips so easily and bones that could fracture with very low force. I had decided I would sell the bike and treat myself to a new big tele. At least that’s something I can still do. It was hard to make that decision. I first started riding bikes when I was a kid in the woods. I got my first 50cc when I was 17. As I improved and had a bit more money so I got bigger and bigger bikes. Going from 50cc to 125cc then 250cc before halting at my SV650cc. This was the largest bike I could ride with my short little legs. It was possible because it was one of the few bikes you could lower the seat on.
I’ve included pictures of my various bikes so you can see what I’m talking about. The bike for me was a symbol of my freedom. I could go anywhere and I wasn’t afraid to drive round Hyde Park Corner of take off through the New Forest. I felt as one with the bike and fluidly moved through the air. I’ve suffered from nausea for many years. When I am on the bike and have the air blowing through me, it takes the nausea away.
I enjoyed turning up for services in churches that didn’t know me or at the crem and people would do a double take at this small woman on a big bike. You could see the nudges and the smiles when I undid my leather jacket and they could see my clerical shirt. I’ve always defied being put neatly in a box.
So you can see that me deciding to give up the bike was a big thing. I had intended to go for one last ride to say good bye but some thieving scumbags took that away from me. To add injury to insult they also scratched my car getting the bike around it. I was gutted and really upset but had to continue to Kings for my appointment.
Now a month on I think that maybe whoever took it did me a favour. At least I won’t have to try and sell it privately. I’ve also decided I will not be denied my last ride and will find a way to do this even if I just have to hire a bike for the day.
A few days later Maggie and I were heading off to Kings again and this time the car wasn’t happy. None of the keys worked. I knew it wasn’t the key fobs as I’d changed the batteries recently. We had to make alternative arrangements and I would ring the RAC when I got home.
The RAC told me they would be with me around 9pm. The length of the wait was due to me being at home and less of a priority. Sadly the fella didn’t turn up till midnight. The 12v battery was dead. The car is only 4 years old. This shouldn’t happen. It was being driven less frequently because of me still being propped up on the sofa and unable to do much. The mechanic jump stated it then poor old Maggie had to take it for a 45 minute run.
Sometimes you really feel the weight of these problems and it seems that life is not being very kind.
One of the hardest things that happened was my lovely friend Fiona died after her transplant failed. She and I had been MDS pals for 23 years. We were both sporty, women and young. Most people diagnosed with MDS tend to be older men. We didn’t fit the bill so we stuck together. For a while we were joined by another woman called Sharon. All 3 of us had different types of MDS and were committed to setting up a patient support group. MDS UK was the fruit of our labour. Once it was up and running I bowed out as I was raising my family and studying theology as well as working full time. Even just writing that now makes me feel tired. It almost seems incredulous to me that I had that energy and drive at that point in my life.
Sharon was the first of us to need a transplant. Sadly there were no donor matches. Despite a brave campaign by her family, she died before a donor could be found.
I had my transplant in Oct 2016. As regular readers will know this how not been plain sailing. The cancer may be in remission but the effects of treatment have ravished my body and I’m now very frail compared to how I used to be.
Fiona lasted the longest before needing her transplant 2 years ago. I was desperate to attend Fiona’s funeral and honour my long term friend and MDS buddy. Problem was I was having enough trouble getting myself together to go to Kings. There was no way I could have safely got myself to Birmingham.
I was so upset by all of this that I couldn’t even bring myself to watch the live stream of the funeral. I’m not a big why me type of person because I do think why not me. Thinking about Sharon and Fiona and being the last one still around makes me wonder why am I still here? What is there still for me to accomplish. These are all heavy questions that show a spirit in angst. Once again all I could do was sit in the pain of it and wait for things to improve.
A few days later I had the strength to watch the funeral recording and see the love that went into sending my friend back to God or The Universe whatever belief works for you. Her loving husband and family did her proud. Thank you Fiona for you companionship over the years I’m proud to say you were a friend and I know you will reap the rewards of a life well lived.
Another important event I missed was as my lovely friend Michelle’s inquest into her tragic death. I wanted to be there for her family as I know how hard these things are. Instead I was propped on the couch and all I could do was send messages of support. It’s so frustrating when you can’t rely on your body and you miss out on so much. I was always a very reliable person. If I said I was going to do something, I would do it. Sadly that’s not true anymore. I’ve had to learn to say I’d love to do that but may be unreliable due to long term illness. It’s a real frustration for me but there’s nothing I can do about it apart from own it.
After the best part of being on my couch for 6 weeks I started to turn a corner. I was wincing getting up rather than yelping. I always wake up in pain. If I didn’t, I would think I was dead! Lol. I can manage the pain being a dull roar and that’s where I’m back to. I must confess though I’m slightly anxious that it will happen again I told the consultant that if I knew that walking over hot coals would fix the problem, I would do it. I was desperate.
The last couple of months have been tough on me and those closest to me. I always hold on to the belief that tough times don’t last but tough people do. Sometimes all you can do is grit your teeth and know that “this too shall pass”
I wouldn’t say I’m totally out of the woods yet but I’m able to do a few things again. Last week I was one of the patient reps at the opening of the newly refurbished haematology ward that I’ve been a patient on. Dame Kelly Holmes was the invited guest. She spoke movingly about her mum who had blood cancer. She used to come to Kings for her appointments. It was a lovely event and it was great to see the thought and care that had gone into the refurbishment.
I’m at Kings again today. This time I’ve driven myself. Things are gradually getting back to what my normal is. My encouragement to all of you is just be brave enough to sit in the pain for a while. Sometimes that’s all you need to do and it will pass. “I love the light for it lets me see the way and I love the dark because it lets me see the stars.”
