Hi Lizzie. I just wanted to wish you well for your stem cell transplant. I hope all goes to plan and that you manage to get through it with the minimum of infections.
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Thank you Alfie I will keep you all posted! Hickman line gone in today wasnât too bad at all. 
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Thinking of you loads, take care and I hope to hear from you soon.
Hi Erica, thank you, just waiting for ward to confirm my bed tonight, chemo starts tomorrow to start conditioning for transplant. Must admit to feeling Anxious x
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Thinking of you. Hope all goes well X
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Hi everyone, Iâm Gillian. I was diagnosed with CLL in February 2018 and started FCR chemo treatment in the April. I had quite a rough start with the chemo, resulting in admissions to hospital in the first 2 cycles. After a reduction in the chemo dose, the following cycles didnât lead to further admissions and I was able to cope with the treatment at home. I completed my chemo in September 2018 and am now on âwatch and waitâ, and waiting results of my repeat bone marrow biopsy.
In October I returned to work, but have had some difficulties with fatigue and chemo brain, and the emotional feelings of post chemo life - which I donât think a lot of people understand.
Not sure what the future holds - but hopefully 2019 will not prove to be as eventful as 2018!
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Hi Gillian, thanks for introducing yourself. I was diagnosed with CLL in 2003 and I have been very lucky as I have been on watch and wait ever since. It seems to me you have been through an awful lot physically and emotionally since Feb 18 and that you went back to work very quickly after your chemo. People certainly do not understand the effects of fatigue and chemo brain let alone dealing with the emotional side. I found I did not understand what I was going through so how could I explain it to my employer. I think outsiders perceptions are that you have had âtreatmentâ so you are âbetter or curedâ.
I hope you will realise by this community forum that you are not on your own, we all understand what you are going through as perhaps others cannot. The main thing is that you take care of yourself and your needs. Can you tell us a bit more about the emotional feelings you are experiencing of post chemo life?
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Hi Erica,
Thank you for your reply. Iâve read a number of your posts since joining the community today - Iâm sure people will find them helpful.
I continued working post diagnosis, right up to the day I first started chemo. For me I found it helpful to be occupied and felt supported by some of my long standing colleagues.
I was quite eager to get back to work, to have some ânormalityâ back in my life after being off work for about 6 months. Living on my own, with no close family (and my closest friend moving miles away when I started chemo) I felt quite isolated at times, as I was so used to working full time and then suddenly found myself at home for weeks on end.
On returning to work, I did find it difficult both physically and emotionally. I struggled with âchemo brainâ finding it difficult at times to recall information and complete basic tasks which I have done for many years in my role. This made feel quite inadequate and I doubted my ability do anything. Normally I am known as âthe oracleâ where I work - but suddenly I found that I couldnât recall phone numbers or complete computer tasks which I constantly used prior to my chemo. This has improved over time and I would strongly advise that if others are struggling with this, that they explain to their colleagues about âchemo brainâ. In explaining to others about how the chemo brain is affecting your work, you can kind of stop judging yourself and I found Imwas then able to laugh and joke with others about it.
Initially I had very mixed emotions- sometimes I would be fine, other times I could be quite âblubberyâ! And this is still true to a certain extent now. The graduated return programme for my work was a phased return over 4 weeks, completing 25%, 50%, 75% and then 95% in the 4th week. By the end of the 2nd week it quickly became apparent that I could not achieve this schedule. In consultation with Occupational Health and my Ward Manager, my hours were adjusted so that I worked 2 part days, day off, worked 2 part days. I have then gradually increased these hours, but still only managing 4 full days at the moment. So initially I felt a sense of failure - because you look ok, most people expect you to be back to normal and they donât understand the physical impact of returning to work. Thankfully, my Occ Health Doctor was really understanding and helped me to realise just what a hammering your body takes with chemo and that it can take several months to regain recovery.
When you finish treatment and return to work, a lot of your support structures cease or become unavailable (because of your work hours). So you find there is not the same amount of structure that Clinic Appointments give you as they become further apart and Iâm not able to attend some of the support activities that I went to as they take place when Iâm at work.
I feel the CNS support could be significantly improved in this area, making you more aware of what to expect post treatment and with regards to your future treatment plan.
I find that some colleagues just donât know what to say, so either they never mention my illness or avoid me. But other colleagues have been so supportive by just talking about my CLL as something quite ânormalâ and a part of me. You quickly find out who you can be honest with - laugh about it with, cry about it with. And emotionally I am improving over time.
If I ask others how they are, they will often tell me and then add, âbut thatâs nothing compared to what youâre going throughâ. I have learnt that it is important to help them realise that yes, some days you feel absolutely rubbish, but other days are ok or even good and that there is no need for a comparison scale - everyone, with or without cancer, will at some point no doubt experience the whole spectrum of emotions.
Distraction Therapyâ, be that work, walking, coffee with friends - that has and continues to be the best way forward for me and accepting that itâs ok to be me as I am right now.
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Thanks so much Gillian for letting us know what it has been like for you going back to work. Although I have not had any treatment I can really relate to what you say in so many ways, it brings it straight back to me even though it was 15 yrs ago. I agree âdistraction therapyâ is far better than me and my head. I have certainly looked at my life and changed my priorities. I am far less materialistic and as you say walking and coffee with friends are high on my agenda now. Yes, accepting that it is OK to be me as I am right now, with the fears, thoughts and feelings I have.
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Happy New Year to you all.
I was diagnosed with ALL b+ Philadelphia negative aged 52 after ( the usual?) miss-diagnosis by my GP.
Initially the acute pain in my chest was assumed heart and then indigestion; however as this developed into nighttime sweats and flue like symptoms every afternoon with extreme exhaustion, a blood test revealed a low white bloodcell count. This was dismissed as ârogueâ, so another test was ordered and the obligatory week passed waiting for the results. This process was repeated twice more, and with my white cells, haemoglobin and now platelets crashing I was initially prescribed steroids, before a second Drâs opinion was sought (Lucky Break no.1) and I was referred to Broomfield Hospital haematology.
Following a bone marrow biopsy (âI never want another one of those doneâ I thought at the time LOL!) a week later I was told by the haemo-oncologist that I was now in âa dark and lonely placeâ and had developed leukaemia. Whilst I hated his harsh words at the time, on reflection over the subsequent years?
To be honest apart from the children in a plastic âbubbleâ who had advertised the Anthony Nolan Trust on TV in the 70âs I didnât even know what it was - and it certainly had nothing to do with cancer!
Anyway i was told that I was to be admitted there and then - âNo chanceâ I promptly replied. Another family member had developed lymphoma a few years previous (that was assumed to be a tropical disease) that had left her on an isolation ward at Broomfield for a month before finally being transferred to Barts London.
âI am going to Bartsâ I declared (Lucky Break no.2)
That was 6 years ago.
The road I have trodden since has at times been very rough, and what I have to say about the journey may well not be what some will want to hear.
But none the less I have survived (with further lucky breaks) both physically and mentally('ish)!
There are no rules in this; everybody is as different as every cancer.
So whilst my experiences are probably unique to me, maybe, just maybe I can help the next me avoid that âdark and lonely placeâ when he is forced to join the big C club?
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Thanks, Robin, for telling us your story. I think the words âroad troddenâ and âdark and lonelyâ are so true. I only wish I had found this community forum and the Bloodwise support line when I was diagnosed, I felt I was the only person in the world in the position I was with the fears, thoughts and feelings whizzing around, let alone the symptoms that were not going to be treated. I could not explain to work what I did not understand myself. This was in 2003 and all those fears, thoughts, feelings and the feeling of being in a bubble of isolation wanting to pull the CLL out of me come straight back to me. Keep letting us know how you are.
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Hi - I was diagnosed with CLL in the summer. I was referred after a routine blood test last May. However we were in the process of a house move and the 50+ Days wait to see a specialist was too long and we moved before the consultation. We lived temporarily with my daughter and I tried again. This time the wait to see a haematologist was 150+ days. I realised that having a raised white cell count was not good so in desperation I decided to see a specialist privately. This was not a cheap option! However the diagnosis he gave me was CLL, confirmed by further blood tests and the advice was that I would be on âwatch and waitâ and to register with a GP on moving and start again to get into the system. We have now relocated to Wiltshire and found a GP, who agreed that watch and wait would be the way forward but he referred me to the local hospital in November, to check with them too. After weeks of silence I have finally received my first appointment in the coming weeks. I have to say I feel somewhat let down by the NHS, which has proved that it is anything but âNationalâ. The diagnosis I now have, was sort as I was anxious about the situation. I do understand, now,that there probably wasnât any urgency as there is no treatment the present, however the anxiety and frustration caused by the inability to consult with a haematologist has been difficult to cope with. I have had my first blood test check this week and the good news was that the WC count had reduced as well as the lymphocyte count, although I am not sure what that means. Perhaps I will know more after my first consultation.
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Hi, thanks for letting us know what has gone on for you, it sounds an isolated, scary place to be in. I also have CLL, I was diagnosed by a blood test in 2003 after a gynaecological op that I recovered from but I had symptoms like flu, fatigue, weight loss, hot and cold flushes etc. I have been a very lucky girl and been on watch and wait ever since. As I type this I am reliving when I was told I had CLL. I went into complete shock and the fear and anxiety were overwhelming. My mind just whirred round with all these fearful thoughts and feelings. I felt I was the only person in the world with this condition. How could I explain to work what I did not understand myself. In all our minds were the thought that if you have something wrong with you that you have treatment and are âcuredâ and everything goes back to 'normal. it took me a long, long while before I calmed down a bit, but even today the fear comes back before every medical appointment. I have got to know myself so much better over the years and I manage the symptoms I was diagnosed with. I now do not deal with what personally stresses me well and my fatigue can set in immediately I overdo it emotionally or physically or up to 48 hrs later. If you need support the Bloodwise support line details are above and I hope you find this community forum informative and supportive. Please do let us know how your first consultation goes.
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Hi there Iâm EmmaâŚonly just joined the forumâŚI was diagnosed with blood cancer 14yrs ago and up until recently havenât told anyoneâŚI was in denial for a long time âŚwanted some support and to meet others going through same thingâŚi have essential thrombocythemiaâŚi have been very tired over the last few years more so recentlyâŚhave gained weight and feel pretty pants about myself at moâŚI have 2 grown kids and a full time job for the NHSâŚwhich is so draining at timesâŚlook forward to chatting to othersâŚ
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Hi there Emma, I am so glad you have joined our community, I have found there is a lot of interesting, informative and supportive posts on here. I was diagnosed with CLL 15 yrs ago and I have been a very lucky girl and I have been on watch and wait (active monitoring ever since). Yes, the fatigue is so difficult to manage. I realise I do not deal with stress well now and when I overdo it with what personally emotionally or physically affects me the fatigue can set in immediately or up to 48 hrs later. Also the weight gain is so, so difficult to tackle especially if I feel pants about myself. A full time job sounds very demanding and draining. Telling people is a dilemma and initially I felt I was no longer Erica, but seen as âErica with leukaemiaâ. They did not know how to be with me and I felt avoided or peered at and everything in between, they did not know whether to ask me how I am or not, but luckily I am past those feelings now. The question we all had was if you have blood cancer why are you not having any treatment âto make you betterâ. I have a grown up son who was living locally at the time and I think he felt it easier to avoid the situation and a husband who can not be there for me emotionally and I think just avoids the subject, however I have some brilliant, supportive friends. Donât forget the Freephone Bloodwise support line is there, their details are above. How have people been when you have told them.
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Thankyou for that EricaâŚyes Iâve felt the same emotionsâŚI told my kuds over XmasâŚinitially they were abit worried but now itâs as if it doesnât matterâŚunfortunatly my kids are very selfish so I get no support or understanding from themâŚthey are 20 and 24âŚbut I also told my brothers and mum who were shocked but are there for meâŚmy dad is no longer around and I donât have a partner so I have kept it to myself all this timeâŚI do have a couple of very good friends who I have told and they have been very supportive for me⌠.but they have their own problems tooâŚone of them having MS at 44âŚdiagnosed 10yrs agoâŚbut this is a good place for me to share my feelings and thoughts like Iâve never done beforeâŚitâs very comforting âŚI am bieng treated with chemo drugs and see my heamatologist every 3mths and see my Dr every fortnight as I am on warfarin tooâŚ
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Hi Emma, I have had the same sort of reactions from family and friends, Everyone deals with things in their own way. I think it is even more difficult with conditions you cannot see. I broke my arm a few years back and I got so much help and support. Yes, keep sharing and everyoneâs conditions and treatments might vary but I have found it is the isolation, fears, thoughts and feelings we seem to share.
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Yes thatâs true EricaâŚitâs the thoughts feelings of being understoodâŚscared for the futureâŚaccepting the cancer and itâs symptomsâŚwandering how others will feel and look at you since telling themâŚI cannot believe I kept it all to myself all these years but just put it aside and got on with lifeâŚbut I feel since Iâve opened up to speak about it I find it all abit emotional and difficultâŚbut Iâm finding it comforting sharing these feelings on hereâŚ
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Hi Emma. What an amazing lady you are, keeping your diagnosis to yourself for all that time. I am pleased that you find the forum useful for being able to open up about how you feel and what you are going through. I am sorry that you feel you are not being supported by your children. Do you think they have gone into denial about your diagnosis? Have you spoken to anybody at work yet? Do have a look on the Bloodwise website if you need information, and you can speak to someone on the support line if you need to hear a comforting voice.
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Hi pisces56
Thankyou for your reply. No I donât think my kuds have gone into denialâŚthey are just very wrapped up in themselves. I have told my managers at work in supervision recently as patients and staff have had concerns about my behaviour at work not bieng myself so I had to tell my managers. They were very supportive to me and we are still sorting my shift pattern out as I get very tired. I work 13hr days for the NHS on a phychiatric ward which is tough going at times. Im the k8nd of person who puts others first all the time but now im speaking out for myself.
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