I am pleased that you are getting the help you need at work. Working 13 hour shifts in a psychiatric ward is tough for someone who is 100% well. Be kind to yourself
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Yes it isâŚI do love my job but through the winter months find it very tiring due to my condition⌠I do make sure I get plenty of rest at homeâŚsome days I have laid in bed all day sleeping because Iâm so exhausted.
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Hi
Iâm Nicola 37 from Cardiff
Currently 1 year in remission following shock AML diagnosis. November 17.
All treatment with B4 HAEMATOLOGY uhw Cardiff.
Diagnosed AML inv 16 treated chemo only.
Physically doing well. But mentally itâs torture.
Xxx
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Hi Nicola. Last week the Bloodwise policy âHear our voiceâ was launched at an event in the Houses of parliament. Henry Smith MP is championing our cause. One of the things being asked for is an improvement not only for kinder treatments, but for improving psychological support during and after treatment. You will find several people have posted about difficulties they have had, and remember, you are not alone with these feelings
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Wow, 13 hr shifts are tough for anyone let alone being in such a pressurised job and also having a blood cancer. I know the putting others first, I was brought up that that was a quality and then being a wife and motherâŚâŚâŚ I also know the work-sleep-housework pattern and again that youngsters are so wrapped up in themselves. I really am working at putting my needs first, take care.
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Thankyou Erica for your replyâŚyes this is the first time in a long time I am actually putting myself firstâŚI have spoken with my manager about my work hours today and she is working in it and very supportiveâŚ
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Hi was diagnosed in September last year and currently going through treatment. Would be very interested to hear from anyone diagnosed with high grade non hodgkins lymphoma. Thanks.
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Hi Fran, I cannot answer your question, but I wondered if you are currently going through treatment how you are feeling and coping? Take care.
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Yes I am going through chemotherapy just now. Had 5 out of 6 with radiotherapy to follow. Have gallstones which I never knew about which have been troubling and thatâs been the worst thing. Also the steroids feeling âwired and tiredâ has been unpleasant. Needless to say I have been told I am âdoing wellâ and half way ct scan said 'no evidence of lymphadenopathy '.
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Hi I am Fran diagnosed September last year with diffuse large b cell lymphoma. Currently in treatment chemotherapy then radiotherapy. Always have quite but donât always get answers!
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Hi Fran, I find being told I am doing well is one thing but it doesnât mean how I, myself, are really feelings, the fears, thoughts and feelings going round and round in my head. Weird and tired and the gallstones sound unpleasant to me. I am getting better at asking those fears and questions when I have an appointment but it has taken me a long time. It sort of empowers me to be persistent. Have you got any support from family and friends?
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Hi, Iâm Wendy. My friend told me about Bloodwise. My mum was diagnosed with AML in the blast stage in November and it is being managed very kindly. She is in good spirits and is doing well. I know itâs not about me but I am finding it difficult. I am glad the forum is here.
Best wishes,
Wendy
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Hi Wendy. I am pleased to hear that you are happy with your motherâs treatment. A blood diagnosis impacts on anybody who is closely associated with that person. Is there someone you are able to share your fears with, someone you can share a coffee with when feelings overwhelm you? If you are also caring for your mother you canât always be strong. We are here for you and hopefully some of the topics shared will help you
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Hi Wendy, I am so glad you have found our forum, it is here for everyone impacted by blood cancer. Often no one thinks about what the family member is going through. What I have found is that we all seem to share the same fears, anxieties, thoughts and feelings. Also donât forget the Bloodwise support line is there for you too. The details are above. Can you tell us a bit about âfinding it difficultâ and how that is for you?
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Hello Erica.
I turned up to my first haematology appointment today to find I was not on the list. On enquiry it seems that my appointment had been cancelled and referral refused as they feel I can be monitored by my GP at this stage. The cancellation was news to me! It seems it may have been news to the GP too. No one had bothered to cancel the appointment with me. I do understand that I am on watch and wait and I understand that my white cell count is raised but is not extreme. However to date I have not seen anyone in the NHS re my condition other than GPâs for referral to hospital. My diagnosis was obtained privately as explained before. I feel that the professionals I have seen in the NHS take the attitude that my case is no big deal and to be fair, it probably isnât to them. No one has asked me if I am ok having received the diagnosis. Yes I have had CLL explained at the point of diagnosis but at that point it is hard to take the news in , let alone come to terms with it. Fortunately I have already dealt with breast cancer so have been through the shock of learning that I have cancer. I am now just doing the best I can to get on with life as I am keeping well at the moment. Sticking with the GP and regular blood tests.
We have complained to the âCustomer Careâ at the hospital re the cancellation and are awaiting a phone call back, once it has all been looked into.
Just another day on my very frustrating journey with CLL!
Barbara
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Hi Barbara, yes, the frustrations ring bells with me too. I have been referred back to my GP for active monitoring very recently, with the option of a fast track back to the consultant if need be. I am hearing quite a few patients with CLL, on watch and wait, being referred back to their GP for active monitoring. When I read back my diary of events back recently I realise what has happened to me along the way and especially the fears, thoughts and feelings I had at the time. One of the comforts of this community forum I have found is to realise you are not the only one !! Keep letting us know how you are, perhaps just because you have had one cancer diagnosis in the past doesnât not make it any easier.
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Hi @BarbaraE @Erica. Not being familiar with the frustrations of watch and wait, I wondered whether you are allocated a CNS or someone you can talk too? I know that psychological support for all is something that has been raised in the Bloodwise policy document. How do GPs monitor? Is the onus on you to book appointments?
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Hello
The GP is happy to monitor the blood tests and has put a 6 monthly marker on my computer record which will flag up when I need to go. However I have already marked it on my calendar, to be safe.
As I had to obtain a diagnosis privately, it seems nothing else has been offered. The NHS has had the diagnosis for free so donât really need to do anything else. I could return to see the private specialist I saw again, but as I was self funding that could get mightily expensive. He did explain fairly fully what CLL was, and about the process of watch and wait. Of course he gave me lots of time too but then it was expensive, especially to have the full array of blood tests. He also gave me a Bloodwise booklet to read and I noticed that it states that support will be offered but that has not been so. In fact I wouldnât have had the booklet at all left to the NHS!
How ever after yesterdayâs farce at the local hospital I am not in any hurry to return. I have felt happy so far with my new GP practice so will just turn up at 6 monthly intervals and hope that things remain fairly stable for a long time.
I am coping fairly well after the initial shock, especially the shock of the âleukaemiaâ word. Now I have come to terms with watch and wait and am determined to live life to the full while my health allows me to.
Thanks for you response though - it is very much appreciated.
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You seem to have things in hand. If you head over to the Bloodwise website you can find more information including patient blogs and numbers to contact if you want to speak to someone on the support line. Best wishes
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Hi @Pisces56 and @BarbaraE, I believe, on the NHS I was given a number of a nurse contact, although I was in too much shock at the time for anything to sink in. I am quite happy with my GP monitoring me, with a fast track back to the consultant if need be, it saves the trek to the hospital. I also get more comprehensive blood tests done at the GP and I can get a copy of the results with no problem. I chart my blood tests electronically at home so I can see everything that is going on as well. However it is my responsibility to make my regular appointments, which is no problem. I also make sure my GP surgery and hospital are supplied with Bloodwise leaflets and I have told them both I am happy to talk to anyone with a blood cancer. I feel one thing I can do is to make sure I spread the Bloodwise word locally and keep everyone supplied with leaflets. When I wear my Bloodwise tee shirt to the gym and classes I am a walking billboard.
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