Hello friends. I thought I would let you know how things are going here at Southampton Hospital.
It's now about three weeks since I finished the debulking chemotherapy. It was tough and I naively thought that I would start to feel better when it was finished, but I felt very weak and ill for some time. I have needed platelets and red cell transfusions almost every day and for a while it seemed that my spleen was just gobbling everything up as soon as it hit my vein. However, things are gradually improving although my neutrophils remains stubbornly at 0. Apparently though, in Myelofibrosis, counts are slower to improve than in other blood cancers and so far I have been reassured that it's normal.
I still hope to get a few days at home before coming back in for more chemotherapy and the actual transplant but I can't set my heart on it.
Unfortunately the hospital food is provided by Serco so healthy food is becoming a distant memory! However the team looking after me is fantastic.
Sorry for such a long post.
Love to you all, Jennie
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Believe it or not, I was just thinking about you yesterday and wondering how you were doing. I’m so glad that you posted an update. I know you’re going through a rough time but it looks like you’re going to get through it like the trooper that you are. Sending positive thoughts that things continue to progress and that you do get to have a few days at home in your own bed with your husband by your side.Sending lots of love and hugs,
Saddens me to learn that you are battling a tad at present... Hopefully, just another tiny bump on the journey to the new you waiting just around the corner...
Thanks for thinking of all of us at such a time & for sharing part of your journey with us too...
You are a strong woman Jennie & an inspiration to many i'm sure...
Stay happy & strong, & remember Uber Eats is just a phone call away...
Hi Jennie, thank you for letting us know how you are doing. You are such a strong lady you will come through this with flying colours I am sure, but for the moment its a tough old journey but have faith and courage and you will come through it all.Just need to get home for a few days to have some decent food, hospital food leaves a lot to be desired.
Hi Jennie, good to hear things are going to plan. Its great to have your updates. Hope you do manage home for a little while and I'm sure your husband does too. Pity about the food but you will appreciate hubby's cooking when your home.
Sending you good wishes and virtual hugs, 🤗🤗🤗Wish I could send you some good food. Maybe you can find some decent food from a carry out/delivery service. I have done that on previous hospital stays.
Hope you get a break to go home. If not, hang in there. Things will get better after the transplant is complete.
Jennie Thanks for keeping in touch. It sounds like you have had a difficult time but hopefully things will start to improve and you make it home for a bit of TLC
We are thinking about you and look forward to hearing when you have a good result
I hope you may get home for a few days Jennie to raise morale. You are probably also longing for some fresh air and your own bed even for a short period. It's obviously been a very challenging few weeks.
Isn't it extraordinary that in the 21st century when we are inundated with information about healthy eating that hospitals of all places still can't manage it? I seem to remember different 'celebrity chefs' being employed to advise the NHS to no appreciable difference other than wasting money.
Hi Jennie. It’s good to hear from you, I’ve been wondering how you are getting on. Can you get one of the staff on the ward to smuggle you some contraband food in? I hope you manage to get home for a couple of days, it will do wonders for your morale. But otherwise keep battling on and know that we are all rooting for you. Best wishes, Garry
Hi Jennie,Great to read your account of how things are going. I wish you continued success in your challenging journey not to mention a break at home with your hubby and some decent food! It will renew your spirit and give you the strength to go on.
Your posts are so informative , thank you for letting us know how you are getting on. I hope you will soon feel better , I am sending positive thoughts and a big hug.
It is so lovely to hear from you with an update. I am sorry to know it has been really tough going but that you are slowly improving which is great news. A few days at home I am sure will do you so much good, getting some decent food and time with your family. You are inspirational to many. We pray for continued good treatment for you as you carry on with this journey.
Hi Jennie. Thinking of you and sending you my very best wishes. I often read your posts and I am pleased you have updated your progress. I hope you get home for a break and get to sample some healthy home cooking!Rachel
Prayers and good wishes. I too am on that precarious roller coaster of chemo vs low blood counts. I remain hopeful that the end result will be all worth it. We fight, we win
Hi Jennie I have of course been sending you warm, loving and healing light, but a more practical thought is how can you get hold of healing nourishment. I am about to face the same problem as my hip op is very, very provisionally booked for 16 May.
Here in Herefordshire, the County Hospital had begun allowing one designated visitor a day but that has just all been stopped again. Is that the same in Southampton? Is your husband able to visit?
I have been stockpiling frozen meals of homemade vegan organic stews and stir-fries with plenty of garlic, onion, turmeric and ginger which are suitable for warming and bringing up to the ward in a thermos. No soups ready yet, but these were next on my list.
I have yet to find out if they can still be delivered to the ward in some way. I am sure front desk is a non-starter. Chances of stuff ever getting to the ward at at all and then before it has gone cold seem slim, approaching zero.
Of course top of the list would be salads but that would be a lot of work for your husband or my daughter, who will be working from home while she is staying with me.
I am considering, Jennie, that even if you do get respite at home before the next part of your treatment, you health is still going to suffer for quite a while, and so unnecessarily, if you cannot set up access to quality, healthy, healing food.
As it is, the treatment itself is leaving you in a poor condition to summon the energy to deal with this, but I do hope you will find a way to address it.
Sorry you are going thru the rough stage now. I imagine it will make you feel even that much better when you get further along. Thanks for taking the time to let us know how you are doing. Wishes and prayers coming your way. Hang tough.
Hello Jennie - good to hear from you and to know how you are getting on.I was only thinking about you yesterday (and seems I was not the only one!) so delighted to see your post today. Sorry about the food and sympathise - you can make up for it when you get home and then have anything you want! Thinking of you lots, and in my prayers, and I know you are a very strong lady. Take care and God bless, love from Sue X
Hi Jennie! So glad you gave us an update. I am sorry you are feeling poorly but I suppose that is to be expected though not welcomed. I do hope you get a bit of a break and are able to go home but either way, you are on the path to healing. Sending you positive thoughts and healing energy! I will keep you in my prayers.
Hope you will be able to rest in the comforts of your home before resuming treatment. Thank you for sharing an update with us. Will be praying for healing and strength throughout your journey.
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