On Monday, Heather and I returned to Kings for the usual checks and also a appointment with my consultant.
The plans for the transplant are moving forward. I need to attend a “work up” day
on the 31st. Thank goodness it isn’t a “workout” day….after so many weeks in bed I have lost some muscle in my legs and arms, I have to keep doing the exercises I was given. I will undergo a day of checks on my heart, lungs and kidneys in preparation for my transplant. I will be re-admitted to hospital around the 5th or 9th Aug, so a couple more weeks at home ! In the meantime, Heather has been advised
her ” harvesting” dates will be the 18,19th Aug. More on this later as apart from hospital appointments I am just focusing on time at home.
Well strangely I actually had my hair trimmed this week – against all odds following
Intense chemo, I have lost patches of hair but some remained… Think about a monks hairstyle and you will get the picture ! Yesterday, my hairdresser David came round to give what hair remained a trim
to try and even things up. He also played with my free NHS wig which actually isn’t too bad. I haven’t actually used it yet and it seemed strange to look into a mirror and see myself with hair. I think it might be a little hot to wear. As I mentioned right at the beginning of this treatment, hair loss is not a major concern as it does grow back.
I have put in a picture of the wig…. Still don’t fancy sharing my look without a hat 😉
This weekend we are going to Herefordshire to spend a weekend with Mum. You
Would think I was going on a round the world trip, I haven’t been allowed to venture
very far on my little breaks at home for the past five months.
With that in mind I think I will sign off now and share some delights of the English countryside with you over the weekend !
I can hardly believe I have been home for a whole week ! It feels so wonderful to sleep in my own bed and not get disturbed during the night or woken up in the early hours.
I have to go to have my bloods checked and have a platelet transfusion every Monday and Thursday. Some appointments at King’s but Kingston hospital whom I have been under for the past eight years have kindly agreed to do the honours on occasions when Kings do not need to see me. This certainly helps with the fatigue as we can drive there. Going to Kings means a longer travel time on the train.
Heather and I went to Kings on Monday, my first outing. We did have a funny moment when there was an announcement on the train asking the public to be vigilant and report anything or anybody suspicious. Heather took one look at me with my mask on and collapsed into giggles 😷 . To be honest, I am so used to wearing a mask that I don’t pay any attention to it….. but one does get some curious looks. Now if we were in Japan, I would fit in !
My top list of things I love about being home :
A full sized bath towel.
Sitting in the garden .
Open windows – all windows are sealed in my hospital room
The feeling of air on my face
Walks in Bushy Park
Seeing trees,flowers – again we have no view from the hospital room.
Being told to eat as many carbs as possible ( that’s a first) Lastly being less dependant on my lovely family and friends, it’s good that they are also getting a little break from hospital visiting and all that involves.
Things I dislike about being home:
Knowing that l have to return to hospital.
Self injecting GCSF
Not allowed to do any gardening
Keeping away from children and animals, somehow it doesn’t seem right putting them in the same line, but you know what they say in the film world – never work with children or animals. The reason for these limits is purely to limit exposure to bugs, infection,bacteria.
Not allowed raw food, I miss my salads, fresh strawberries etc.
Firstly my week started with the very sad news that a very special fellow transplant patient who had been such a help and comfort to me in the early stages of my treatment had died.
This was a big shock,it reminded me of the enormity and complex process that surrounds bone marrow transplant. It has been a stark reminder that it is not always the transplant itself that can be so risky, but also then risks of infection during and post transplant. I continue to be grateful that I am at Kings, the best hospital in Europe for treatment of MDS.
I had a week of chest X-rays, CT scans but at last it seems my infections are clearing up and I am getting back to where I should be. I have been willing my neutrophils to increase – the reward being a break at home before the next round.
Food has become a real issue, almost 6 weeks in hospital this time. With a total of almost three months of hospital food my mind is rejecting another hospital meal. I can assure you that it is my own mind rather than the food itself. My friends started to try and bring in different items for me to try, I also have the added restriction of the “clean diet ” so everything has to be well cooked or peeled. Suddenly boiled new potatoes, avocado and Ice Lollies became the new favourite …. I haven’t touched tea or coffee for over 5 weeks, even water started to taste strange, ginger beer took over. Chocolate still off my taste menu !
Every Thursday the entire haematology team meet to discuss each patient and the plan for the week ahead. For people like me, Thursday afternoon rounds with the consultant and doctors are very important as they are a time to reflect on the past weeks activities and gain an understanding of what is coming. To my surprise, I was told I might go home Friday ( yesterday)
On Friday, we anticipated my discharge but then I was told my neutrophils were still to low. ( no defences against infection)
Heather came up to Kings to watch the Murray v Federer game, she had been at my house cleaning up, gardening …. Just in case !! We were not able to concentrate due to much activity in the room from hospital staff, suddenly around 6pm I was told I could in fact go home.
My immune system is still very low so I need to be extremely careful, but fresh air… my own bed and food that I fancy will go a long way to getting me ready for the next few months.
Bridget kindly drove up to Kings to pick Heather and I up and we were home by 10pm.
I am much weaker than my last home stay due to being more bed ridden this time around.
I will still be an out patient twice a week and I will let you know how my “home stay” goes.
Hilary is coming over tonight, you never know, I might get a little walk in Bushy Park this weekend ! It is wonderful to catch just a little of the summer. After being confined to one room in hospital, my tiny little house seems like a mansion !
I have a mixed bag of things to share, firstly I feel quite exhausted, not because of health and treatment but from watching some fantastic tennis at Wimbledon ! I have never had the time to get gripped, very glad we all have a day off today.
On the health side, I had a bone marrow test early last week and await some results. Hopefully my last session of chemo may have done its job this time. I don’t have any immune system at all and when in that position you become the keeper of your own defence. Even though my room is cleaned well, I still take responsibility for cleaning my own table and wipe door handles,
Challenge anyone coming in my room without an apron and gloves. This is no time to feel uncomfortable about insisting on the standards, infection is the enemy as far as moving towards a transplant is concerned . Talking of which my chest infection seems to be clearing up today, I hope the doctors agree.
I have been on drips most afternoons and evenings going into the night, but I now find I can sleep through when the nurses change the lines – I need to get home for a couple of weeks so I get some reality back.
Several weeks ago I was counting how many transfusions, either blood or platelets I had been given. I have given up on this as I know I am into the 40’s to 50’s over the past three months.
So….. Thank you to any blood donors out there !
Now ….. If any of you are facing a spell in hospital another idea. I was given a “colouring book”
and pencils with very detailed ink drawings which will keep me occupied for hours. I have taken this to another step, anyone who visits me can claim a page . This will be very useful when I start the next step as I know there will be times I will be to unwell to chat, therefore my visitors can doodle away.
I watched the BBC this morning, they were featuring the need for blood and stem cell donors
So I leave you with some web sites