Hi Marilyn
Oh that is certainly justified frustrarion and unecessary stress. I do hope that the information from this forum can be fed back to those in charge of organisation and management in Cancer services. Maybe one day things might improve but unlikely in the current climate they are all so overloaded & I believe over whelmed with a lot of tge special & rare types of cancers and the speed at which new medications and pathways are coming along. I think us patients just have to stick together and keep letting off steam in the hope someone in the system might listen.
Wishing you the very best of outcomes.
K
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Hi Karen and @Marilyn, this is why Bloodwise have launched the āHear our voiceā campaign this week and other cancer and blood cancer organisations also have campaigns and they are all lobbying government. Keep letting us know how you are both of you.
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@Marilyn Hi ladiesā¦ Iām just popping in here to let you know that Bloodwise and specifically the Policy Team are aware of these massive āgapsā in the care of blood cancer patients. I know it may bring you little comfort but they are constantly working on improving this by calling debates in Parliament, launching campaigns and working with decision makers within the NHS. Personally I am going to a meeting in Feb at HQ to discuss such things and there is an APPG (ALL Party Parliamentary Group) which is working on this too and they produced a report in 2018 about where blood cancer patients are being let down.
Let me know if youād like more info on all this or a link to this report.
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Hi there AnnaMam. Thank you for posting this and yes please, I would love more info and a link to this report. This is such an unrecognised but serious problem. I mean, every single time I go to do something essential for my treatment there is a problem, delay, untold phone calls, and often a complete lack of care. The odds persuade me that I am just one of many and this is all totally unnecessary stress on top of having a chronic illness.
I am a member of a local group at which the NHS, local authority staff and local commissioners are present. In some ways it feels like yet another talking shop but I try my best. Just last week we had a meeting and I brought up this issue. I had some sympathetic sounds but had to ask three times which of the people round the table was going to take this matter forward and try to find a solution. Eventually someone took ownership. We shall seeā¦
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Hi again to anyone reading. AnnaMam did you have the link to the report you mentioned in your earlier message?
Iām not a happy bunny at all. On top of the debilitating fatigue and ongoing uncertainty with my meds, I am now four weeks into another leg ulcer. I was taken off Hydroxycarbamide about a week into it but itās still not healing and, whilst not as large an area or as open and infected as the last one was, it is still sooo painful. Iāve had to take the odd tramadol even though, even just taking one knocks me out for the night and the following day too. Iāve just asked my surgery if they can prescribe me something else - paracodol does nothing but Iām hoping they can come up with something else. Meantime, I donāt know till the results come back from my next blood test (Friday) how my platelets are managing without me being on the Hydroxycarbamide. Every other time Iāve come off it they shoot up. My doctors had hoped to try cutting down on the anagrelide but obviously they canāt do that now. And they are not sure that the other drug alternatives will work for me. I go back to Guys in a few weeks when they will have had a conversation about me! I just hope they finally come up with some sort of answerā¦ even if it is just a trial. Itās all so depressing.
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Hi Marilyn. I did not get on with tramadol as it made me nauseous. I have Zapain (paracetamol and codeine) for pain, but that also makes me sleepy, so only take a tablet when desperate.
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Dear Marilyn,
I am so sorry you are struggling at the moment, I believe you have myelofibrosis which I have just read is quite a rare condition. I also have a rare disease ppcl myeloma, do you know many other people who have the same condition as you who you can share queries about treatment options. I wish I had something concrete to offer you but I am a listening ear if you wish to vent 
Best wishes
Alfie
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Hi Marilyn, it sounds a really tough time, depressing time you are going through, I am sorry I cannot help you at all but please let us know how you get on at Guyās and other medical appointments. Take care.
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Thanks for your comments Pisces56, Alfie and Erica. I have now got an alternative pain-killer Gabapentin which helps a bit. I only take it when I have to - the first time it made me sick but I had taken two different pain-killers in the previous 24 hours so it was probably that that did it. It hasnāt happened since but it does make me sleepy. I was at the podiatrist and they said if nobody was looking properly at my leg ulcer I should go to the local walk-in hospital so I went straight there and was there for 6 1/2 hours!!! They bandaged me up and referred me to some tissue specialist who knows about leg ulcers so I am waiting to hear. Meantime, the leg bandage is easing the pain a bit but is pretty hot and uncomfortable. I might take it off later and see whatās going on under there!
Itās funny about having myelofibrosis because I was diagnosed 28 years ago but they are now telling me they canāt see any significant fibrosis on the bone marrow biopsies so they will only confirm that I have a myeloproliferative disorder. This impacts on what alternative drugs are available to me - but makes travel insurance much cheaper. Every cloud, right? When I was first diagnosed I actually did some extensive research to find other āyoungā people with MF (which I was at the time, lol) and found just a few scattered across the country. Iām told that if it really was MF I wouldnāt still be there so heaven knows what the truth of the matter actually is. My doctors are as mystified as I am. I guess Iām just a medical enigma!!
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Hi Marilyn. I hope the new medication suits you better, and that your leg ulcer heals. Have you got a treatment plan for changing and managing your dressings until your appointment?
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Hi Marilyn, it sounds as if a lot is happening for you since your previous post. Please keep posting updates so we know how the medication is going and your leg ulcer. Take care.
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Hi Erica.
You were kind enough to ask for updates. Finally finally (into week 8 of the leg ulcer) things are moving. Today for the first time I saw a specialist nurse who deals with non-healing wounds like leg ulcers. I only even found out they existed a couple of weeks ago! They have put my leg in a tight compression from my toes to just below my knee. It is extremely uncomfortable but they said itās the only way I can heal as it pushes the venous blood back up towards my heart. My anemia means my blood flow is already pretty poor so every little helps I guess. I just read that the compression will remain painful until the ulcer starts to heal. I just hope I get used to it cos right now it feels just horrible and I am struggling to walk. I also had another blood transfusion last week and started on Interferon injections as a replacement for the Hydroxycarbamide that I had to come off (again) because of the ulcer. I just hope it doesnāt cause depression which I know is very common side effect. Iām feeling very fragile as it is. Thanks for being there and for caring.
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Dear Marilyn, itās good to hear youāve made some progress with your leg, letās hope this is the solution. Try to take things easy while you adjust to your new medication, Iām not familiar with interferon other than I remember when it was developed many decades ago.
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Hi Marilyn, thanks for the update. I did not know about the specialist leg ulcer (and I expect amongst other things) nurse, the tight compression sounds really uncomfortable and painful. to say the least. I am not surprised you are feeling āfragileā. I find me and my head are the worst combination and a little bit of fresh air and exercise, even if it is chair bound with my arms really helps me. I also find interaction with people helps, even if it is just on this forum. Perhaps this is a time to really take care and spoil yourself and keep posting we are all here to support you.
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Hi Marilyn, how are you getting on? Has the leg compression and input from the specialist nurse been helpful for you these last few weeks? You mentioned feeling quite fragile, how are you today?
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Thanks so much for the empathy Erica and Alfie - I thought Iād replied to you but it looks like I didnāt. I hate it when I forget, so my apologies.
Thanks to you too Dawn. It is so nice that you come on to see how I am after some days have passed. Itās like having a friend who checks in on you and I really appreciate you remembering.
I can cautiously share some good news on the leg compression front. The team of nurses I see are fantastic - really kind and caring, and they take the time to explain exactly what is happening. They took pity on me after the first week and have used a less intense compression since then, and after the first week when the great reveal was hideous (!!) - each time since then the ulceration looks (and feels) a little bit better. I know itās a very slow process as it has to heal from the inside, but I certainly feel that it is finally going in the right direction.
I have other problems which arenāt moving quite so well, but the ulcer is the most pressing right now so I will focus on that. We are going away twice next month (once for a UK weekend, then later for a week abroad) so I am praying Iāll at least be out of the compression by then and can wear what shoes I want and be comfortable and get some exercise!!
I seem to be tolerating the Interferon okay - tired, but Iām used to that. The Interferon and the blood transfusion seem to have begun to show in slightly improved blood results too - and I will find out on Thursday what the latest counts are. Fingers crossed!
I have a question. WHY do doctors not automatically refer ulcer patients to the tissue viability nurse??? To find out of their existence on my 2nd ulcer and only because a doctor told me to go to my local walk-in is just inexcusable. To end on a positive note though - I am so glad Iāve found them now!!!
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Hi Marilyn, thanks for cautiously sharing with us, it certainly is a slow process and it must be so fearful and frustrating for you. Your tissue viability nurses sound wonderful and caring, I have to say I had not heard to them before. Please do share with us about your other problems and your fears, thoughts and feelings around them. Also, we would like to hear what your latest counts are on Thursday. Take care.
I am so pleased to read your recent update Marilyn, thank you for taking the time to come back and let us know how you are. Itās great to hear the team of nurses are good and you feel well cared for!
Your question around why is an interesting one - and not one I necessarily know the answer to. Sometimes I think those who are experts in their fields donāt always think of involving others with expertise too? Do you feel able to feed back your experience to the haematology team?
2 holidays away to look forward to, you deserve them!
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Thank you Erica, Pisces56 and Dawn. Iām not sure if the haematology team should have referred me to the tissue viability nurse or not - they didnāt actually see the ulcer when it started as I was between appointments and so it was seen by my GP (two of them in fact) and they both under-estimated it. Also - my haem consultant now is such a sweetheart as is the Professor who she is currently sharing my care with. I saw the local Consultant today and my blood counts are much the same. Sheās thinking I should stop the (Epo) hormone injections which were supposed to be helping the anemia but hasnāt done much - and also maybe increase the Interferon if the Prof agrees. She started me on a very low dose to make sure I tolerate it ok (which so far I have) - and she was particularly concerned about the possible side effect of depression - especially as I as so fragile and emotional with both of them. Mind you, I think that was mainly when the pain was at its worse. It is so much harder to cope when you are in constant pain. It is more bearable now so I am coping better. Still so tired though. But if things are moving in the right direction I canāt complain!
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