Hello
Iâm John(48) from Hampshire and happy to say 4 years clear from Non Hodgkin lymphoma.
Diagnosed quickly by my gp on first visit in August and started treatment in September.
My daughter Abbie also had cancer in 2006 (Wilms tumour) and now 12 years clear.
Had enough of cancer in our family and keen to learn how to best to keep it at away.
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Hi John, welcome to our community forum and what a good idea to also see a picture of you, I hope others follow suit. You ask the million dollar question which we would all like the answer to. To look at it from where we all are now I do try to keep myself as fit as I can so I feel it might help me to fight anything I need to in the future. I can see you do your best getting fresh air and cycling exercise which I feel helps me feel better. I have to say me and a bike might be a dangerous combination, but I do go to the gym and take Zumba and pilates classes. I do eat more veg now but I do also believe in having the odd treats. What do you do?
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Hello, itâs not too bad. I feel like each round of chemo knocks me a bit more but Iâm powering through 
if anything itâs the sore mouth and not sleeping that are bothering me the most ahh. I agree the first week is a bad one and the second one is easier - but then I canât do much because thatâs when I see my haemotologist and then have chemo again !! X
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Hello
I have days where I am ready to power through and all go and then other times (like recently) Iâve felt quite lonely, as I think my coping mechanism has been to sort of ignore whatâs going on?? Haha if that makes sense!! I am trying to just accept and keep focused on the final stretch
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Hi Hannah. If you look under the heading living with a diagnosis there are threads on getting a good nightâs sleep and diet which have got some good tips. My personal tip for sore mouth is pineapple and sleep mists are great. I hope you find something to help
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Hi Hannah, when you feel quite lonely please do post how you are feeling on this community forum and see if others feel the same and donât forget the Bloodwise support line is also there for you, their details are above. Feeling lonely and feeling the only one are horrible feelings, do you have any support, although I think perhaps it is only people on this forum that really understand sometimes.
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Hi my name is Lynda and I have NHL. I have been lucky as have only just been advised that I will need treatment in the near future, after four years of âwatch and waitâ. So a bonus four years.
I am awaiting a biopsy which will determine what sort of treatment I will need, Rituximab has been mentioned, which sounds ânot too badâ only one session each week for four weeks and I will not lose my hair. However if the results of the biopsy show that the cancer has progressed it may mean chemo and at my age (76) that sounds very scary and invasive and if that is the case would seriously consider opting for palliative care.
Also I have now developed Lymphodema (not sure of spelling!) which means my right leg has now swollen to about three times its normal size, which as you can imagine is very uncomfortable and curtails my day to day activities : ( . Also difficult to sleep, so occasionally have to take sleeping pills.
As this is my first post I am sorry itâs rather insular, but would be very grateful to converse with someone who is or has been in a similar situation, or has any advice.
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Hi, a great big welcome, and although you felt it was an âinsularâ post I think your post has made me think I now know what is going on with you. I have CLL and have been lucky enough to have been on âwatch and waitâ for 15 yrs. I am 69 yrs old. Yes, I think the thought of treatment is a very scary unknown. The Lymphodema sounds horrible and must be so, so uncomfortable and curtailing. If I do not get out and about and interact with other people then my mind starts whirring with my fears, thoughts, feelings and âwhat ifâsâ. Have you any support, although I am sure you will find some on this community forum.
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Hi Lynda
Welcome to the forum. I hope your treatment is successful and does not cause too many problems. The lymphoedema must be extremely uncomfortable. Have you tried resting the leg on a pillow, and maybe finding some way to raise your blanket/duvet so that it is not adding weight to the affected leg? Has your doctor suggested anything to help?
There are threads in the Living with a cancer diagnosis on sleep which may help, and also there is a section specifically on Watch and Wait. I hope you find some help and support from others on the forum
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Hi Kelly @Chilli76. First of all, you are always going to be a child as far as your father is concerned, and there is no shame in the way that you feel. Be careful with Google, as there is so much information out there, and not always helpful. Bloodwise have patient information on AML if you look on their website. You can download or send for the booklet free of charge. There is also a support line if you feel that you need to talk to somebody impartial.
There is a section on the forum about caring and supporting someone with cancer which you may find helpful, especially realising that you are not alone with these feelings. Have a look there, and if you have any questions which are not covered there feel free to start a new threadâŚif it is a question you have, then someone else has probably had it on their mind, or can help. Best wishes
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Hi, it is great to welcome you to our community forum, there are lots of posts on here and it seems to me that it does not matter whether you are a patient, family member or carer what we all seem to share is the same fears, thoughts and feelings, but family members and carers are also so powerless and helpless and just want what they think is best for their loved ones and hate to see them suffering. Also you always will be the child. I have certainly also been so much more emotional since diagnosis. You must all be in shock still, you have been on a 3 month rollercoaster since your worlds were turned upside down. Please also keep posting how you are as well and how the rest of your life has been affected since November.
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Hello forum members!
I would like everyone to welcome the newest members of the week, who are affected by blood cancer in some way, shape, or form. Please welcome the following:
@sp1946
@Woodpecker
@Chelti
@PhilS
@Duttbutt24
@andrea49
@Jo-Anne
@AnnD
@Setfordm
@ynys
@John691
@Alwenan
@Lyn
@CAE
@Gbeam
@rogermissing
@Saralou
@joncol
@Hayzydayzy
@Firebelle
@Michelle
Please welcome them with open arms and say a friendly âHelloâ to them. Also new members, please feel free to share your story to the online community and start having some conversations with one another. Once again, thank you so much for joining the Online Community Forum and remember, you are in a safe space to share anything you would like.
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Yes, you are all very welcome on our community forum, I find it has lots of interesting, informative and supportive posts on it. Also the Bloodwise support line details are at the top of the page if you would like someone to talk to, but I look forward to getting to know you all better on this site.
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hello I am Andrea 49 and I live in Norfolk.
I have Low grade B cell Non Hodgkins Lymphoma and T cell Mycosis Fungoides. I am on watch and wait for B cell NHL and UVB for MF. I am being well cared for at West Suffolk Hospital and Guys in London and am very happy with my care. I am interested to hear if any contributors have refused chemo and immunetherapy on the basis that side effects can be worse than actual cancer symptoms in particular intense itching. Chronic ill health is hard to come to terms with but in later life quality seems important.
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Hello Kelly, welcome to the forum⌠I was treated for AML in 2015 and can fully sympathise with your dad in that the treatment is very tough⌠at one point I refused further treatment⌠itâs not unusual for patients to go down the same route as your dadâs consultant has offered.
Has your dad been assigned a CNS (clinical nurse specialist) ? Usually Macmillan nurse too? They are very knowledgeable and will be a great source of information about your dadâs case because I know that even though his consultant will have explained things you can forget, need it explained again or in easier language.
Donât be afraid to ask & keep asking his team until you are happy & fully understand what is happening.
I have always found that understanding everything really well helps, though I know itâs not always easy to hear
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Hi Andrea, thanks for introducing yourself and sharing your treatment options. I cannot answer your question but perhaps your medical team, CNS or McMillan teams can talk through your questions, thoughts, feelings and fears with you so you can make the right, informed choices for yourself. The Bloodwise support line details are above if you need to talk to someone. Please let us know how you get on.
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Yes I totally get how youâre feeling⌠itâs been the same for me⌠itâs a bumpy, up & down road for sure. I always say ⌠whatever you need to do to get through is ok.
This forum is a place where whatever you are feeling on any day you can post your thoughts and feelings because there will be plenty of people who have had the same and are here to support you. I know that talking to others whoâve actually been through it or are going through it has massively helped me because only they can fully understand
Keep in touch
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Hello @andrea49,
Thank you so much for sharing your experience with us on the forum and I am sorry to hear about your diagnosis with low grade B non-hodkins lymphoma. I honestly cannot imagine how difficult it must be for you. I may not be able to help with this discussion, but there is another topic about how to tackle itching with non-hodkgins lymphoma that you may be interested in. You can find it here:
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Hi, my name is Sadie Robinson and Iâm from Northamptonshire. The day after boxing day 2018 my dad was diagnosed with AML. Exactly a month later we lost him. Iâm absolutely devastated and donât know how to deal with it all. Just thought Iâd come on here for some support.
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Hi Sadie, I cannot imagine how you are feeling, so much happened in such a short space of time and so sad that your dad could not be saved. This community forum is here for you and I hope you will find it supportive. We all have different stories, most of us are blood cancer patients, some family members, friends or carers. There are people on this forum who have lost loved ones to blood cancer. However what we do seem to share is the same fears, thoughts and feelings at different times. However if you feel you might like to talk to someone at Bloodwise please call their Support Services on 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm). Please give yourself time to come to terms with all that has happened to you in the last 3 mths and be kind to yourself and keep sharing your thoughts and feelings. Take care.
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