Yes, I definitely agree. Different challenges for everybody. However, so many shared experiences regardless of these challenges and that is so useful and supportive x
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Hi Nichola, I am so glad you are finding this site supportive, sometimes it is the similarities and not the differences. Please keep sharing what it is like being you.
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Hi Nichola, I hear exactly what youre saying about the age thing. I was diagnosed 6 months ago with CLL, age 40 and itās really hard to get your head around how it might effect people of a younger age. It is confusing knowing how to apply things that you read when the average patient age is around 70! Luckily Iām on AM but dealing with explaining it to my children (age 12 and 14) and what the implications are for work long term is difficult. Do you mind me asking how your children are with it? Have you told them and what do they understand? I havenāt managed to tell mine yet but keeping things secret isnt great either. Unfortunately we have a lot going on at home at the moment and the CLL seems to be the least of my problems for the time beingā¦
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Hello maddy, just wanted to welcome you to the forum and thank you for your contribution to this issue. I found your post very enlightening as I am not a mother and it shines a light on another important aspect of being diagnosed with a long term condition. I am sure Nichola will be able to empathise with your situation and I look forward to hearing her thoughts . Best wishes alfie, female 56 ppcl myeloma.
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Hi Maddy, welcome to our site and I hope you find it supportive, Yes, I am 69yrs old but was diagnosed at 53yrs old. You obviously have a lot going on at home at the moment but you are carrying a heavy secret. If you feel you would like to talk to someone for support the Bloodwise Support Line is there on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm but you can get in touch whenever you want and leave a message - they say they will get back to you within one working day. Please donāt think we are all āoldiesā on this site, blood cancer knows no age boundaries. Take care and please keep posting how you are doing, thinking and feeling we are all here to support you.
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Iām glad you and your husband found it useful! I can imagine being younger than other lymphoma patients there highlighted there is a gap - have you ever connected with Shine Cancer Support? They support people diagnosed with cancer in their 20ās/30ās/40ās, you can find them at www.shinecancersupport.org.uk
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Welcome @Maddy - Iām so glad youāve found our forum! Telling children is a really personal decision, and youāre not alone in wondering about it. There is a thread over in the ārecent diagnosisā section you may wish to take a look at, and join in if you feel comfortable. Telling children about a diagnosis.
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Hi,
Yes I did. Someone suggested shine to me. Good that there is lots of different support groups out there x
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Hi Maddy. Itās hard isnāt it. Iām on active monitoring to. My children are 10 and nearly 14. After lots of discussions and thinking we decided not to tell the children. We discussed the pros, one being that if we told them now they may not see cancer as something that always means death. I initially had two operations and radiotherapy and told them I had some bad cells that needed zapping and they found that difficult. I know I could be on active monitoring for years so decided it wasnāt worth worrying them. However, itās hard emotionally and mentally sometimes isnāt it and I find that hard to explain when Iām irritable or a bit down. I question my decision all the time but hope Iāll know when the time is right xxx
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All of the support on here from everybody is so supportive regardless of age x
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You know your children best, and it sounds like you made the best decision for yourselves and for them. Active monitoring is difficult to get your head around as an adult, as a child/young adult it can be even harder I imagine.
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Hi Alfie, I just re-discovered these mindfulness podcasts which were created a couple of years ago, specifically with blood cancer patients in mind, and wanted to share them in response to your post, as they might be helpful in some way for some people? https://www.abbvie.co.uk/responsibility/improving-health-outcomes/mindfulness-for-blood-cancer-patients.html
Take care, Alice
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I was diagnosed with CLL in 2005 and have just finished my first course of chemo having been on watch and wait prior to that. I dread appointments as I have always hated hospital but I now have to accept that they are part of my life and are there for good and bad. At least we dont have to pay out for our check ups etc or some of us wouldnāt be able to afford them.
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Welcome to the forum. Wishing you all the best in your treatment. There are some articles on Watch and Wait, and also other topics that might interest now you have started treatmentā¦diet, dealing with fatigue amongst them
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Hi, and welcome to our community forum, I find it interesting and supportive, I hope you will too. I was diagnosed with CLL in 2003 and I have been lucky enough to be on watch and wait ever since, but that does not mean I get a yukky feeling before, during and after all medical appointments. Sorry about the questions but obviously I am interested. How did you think and feel when you first knew you needed treatment? How are you thinking and feeling now after your first course of chemo?
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I had day 5 of my 62nd monthly cycle of Azacitidine for MDS yesterday.
Although Iām pleased that itās still working Iām finding it a huge strain, Iām on 5 days of chemo in every 28.
Iāve had 3 counselling sessions which I found absolutely useless.
I felt patronised. I tried to explain my fears and continued stress Iām under, but it all seemed to go over her head.
I left the sessions feeling very angry.
I guess Iāll have to handle my feelings by myself.
Any suggestions would be most welcome.
Anthony
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Sounds like a tough time at the moment and its such a shame the counselling didnāt work for you. Itās hard enough to seek help
and Iām disappointed that she didnāt acknowledge your feelings. Is there an option of using a different counsellor? I found some that I donāt have a connection with and thatās very important x
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Great to hear from you, Blackhat, and I am also sorry the counselling did not work out for you and you did not feel heard. The chemo must be a huge strain.
All I can say is that being a tad nosey I feel better for a breath of fresh air and gentle exercise that I can do helps me and itās free.
Take care and spoil yourself.
Dear Nicola and Erica,
Thank you both for your replies.
I am arranging to see another councillor, a self referral from my GP shortly.
Iām sure I made myself very clear to the other one but I felt there was no understanding or empathy whatsoever.
Maybe Iām expecting too much?
I donāt think anyone would have any understanding of what we blood cancer sufferers are going through.
Iām incurable, in fact to put it bluntly āIām on death rowā
Iām not at all sure any councillor can deal with that situation.
I came away from seeing her feeling very disappointed and angry.
I donāt want much really, just help to cope with the continuing fear and stress Iām under.
5 years of those feelings is definitely taking itās toll on my mental state.
I do go for walks, I have to to maintain my mobility but the Peripheral Vascular Disease makes it an ordeal. Before that reared itās ugly head I used to walk for miles to relieve my stress, it worked too.
My social life is non existent as I have Neutropenia and very prone to infection.
Not much of a life really.
Best wishes
Anthony
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I really hope the other councillor is better for you. Mine is amazing so they are out there x
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