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.
Hello my name is Simon and Iâm 46 I had a lump appear on the right side of my jawline so went to the drs just before Xmas which resulted in a blood test and an ultrasound. The dr contacted last Friday asking for me to come and see her this evening. I thought this was a bit odd. She then told me that the results suggested a lymphoma lump on right side and further lumps on left side of jaw.she examined me and found a further lump each side of the groin which was I was unaware of. She has referred me to a specialist there and then and Iâm just waiting for that call to attend fingers crossed. A mix of emotions
Hello @Simon,
Thank you so much for sharing your experience and reaching out to our online forum community. I am so sorry to hear about what you may be going through, and I can only imagine how difficult it must be for you. Please Keep us updated on your progress and if you need anything please donât hesitate to contact us at 0808 2080 888 Mon-Fri 10am-4pm Wed 10am-1pm or via email support@bloodwise.org.uk
Hello Simon, I am not surprised your very recent diagnosis means you have a mix of emotions. Your diagnosis must have rocked your world, I remember the fear, anxiety, shock and a million âwhat ifâsâ thoughts going round in my head for a very long while. I am so glad you have found our community forum, I certainly find it informative and supportive. I remember thinking I was the only one in the world and then on this site I have found we might not have had an identical diagnosis, but we nearly all seem to share the same fears, thoughts and feelings. I found keeping a diary of events very helpful and also writing questions for medical appointments including all my fears and thoughts because I walk into the medical personâs room and my mind goes blank and I am back out of the door and I havenât asked anything. I also need to write down what the medical person has said. I see you have the Bloodwise support line details above if you need it. Take lots of care of yourself as you might well be in shock and we are all here to support you. Please let us know how you get on.
Thank you I will keep you posted. Had a call from the secratary of the consultant this afternoon stating he would look at images tomorrow and will be contact
Hello @wendyj
Thank you so much for sharing your experience around your mumâs diagnosis of AML. I am pleased to hear that your mum is in good spirits, but its also understandable that you are finding it very difficult to manage. It might be helpful to share some of your thoughts and feeling in the âAcute Myeloid Leukaemia,â topic thread on the forum. It may be helpful to share some of your thoughts and feelings with others who may be in a similar place as your own.
I am pleased to hear that you are glad you have joined the forum and I hope the Bloodwise online community is helpful for you in connecting with others who are in situations as your own. Feel free to join in on any conversations you may feel relevant to you.
Hello @Fran,
Iâm so sorry to hear about your diagnosis of non Hodgkin lymphoma, how are you feeling at the moment? Thank you for reaching out to our community here, I hope you find some valuable support from people in a similar situation to yourself.
Hello @BarbaraE,
Thank you so much for sharing your experience with your diagnosis of CLL and I am so sorry to hear about the frustration and anxiety you have been feeling. I am pleased to hear you have been for your first blood test now and that youâve received good news. It might be helpful for you to take a look through of our CLL and watch and wait resources which provide further insight into this pathway, which you can find it HERE and you can find our CLL booklet HERE and what to expect.
I hope the Bloodwise online forum is helpful for you in connecting with others who are in situations as your own and please feel free to join in on any conversations you may feel relevant to you. If you have any other questions, concerns, or need some additional support regarding blood cancer information, please do get in touch with our support line at 0808 2080 888 Mon-Fri 10am-4pm Weds 10am-1pm or you may choose to email us at support@bloodwise.org.uk.
Hello @Emmaco
Thank you so much for sharing your experiences with essential thrombocythemia. How do you feel now that you have begun to tell people about your diagnosis after fourteen years? I hope you find joining the online community forum valuable as through talking to others going through similar experiences you may be able to gather some tips and recommendations to help you start feeling a little better about yourself at this time.
You mentioned that youâve been feeling very tired over the last few years. it may be helpful to reach out
to Macmillan. They have a section on âliving withâ fatigue. I also wonder whether youâve talked to anyone at work about how you are feeling? Is it possible to talk to your manager or someone in HR about the effect your condition is having on your working life?
If you have any other questions, concerns, or need some additional support regarding blood cancer information, please do get in touch with our free and confidential support line at 0808 2080 888 or support@bloodwise.org.uk.
Hi Simon,
thank you for getting in touch with the online forum. It sounds like youâve been through a difficult time, and itâs unsurprising youâre experiencing a mix of emotions. Have you spoken to the specialist yet? This community is here to support you through your experiences, so please do share as much as you feel comfortable with at any stage. You are also very welcome to call out support services on 0808 2080 888 or support@bloodwise.org.uk if you would like to talk anything through with our support team.
Hi there
Thankyou for your emailâŚI have been quite emotional since coming out about my diagnosis to the point where Iâve had to increase my medication for anxity/depressionâŚit had affected me at work which I felt disappointed in myself. I am feel lije a big weight has been lifted now and just trying to move on with my futureâŚdonât want to dwell in it too muchâŚI have now informed my managers and occupational health and my shifts have been altered a little to try make it easier for meâŚI donât think the fatigue helps with me bieng overweight but I know come warmer weather I will hopefully feel more motivated than at the momentâŚI donât do winterâŚhow do I get in touch with Macmillan? Do I just Google it and look online? Iâd be interested in any info about fatigueâŚThankyou.
Hi there
Thanks for the response. Am advising that I had previously expressed an I interest in the buddy scheme and spoke to Sharon before Christmas.
However I feel that I have sufficient support now and would therefore wish to cancel my note of interest.
Apologies for any inconvenience caused.
Regards and thanks
Frances Dufficy
Hi my Macmillan support is within my Haematology/ Cancer unit of my local hospital. Some bigger hospitals seen to provide things like Maggies Centres. If that fails I go back to my usual responses of either âgoogle itâ or ask at the hospital or your GPâs. Another way might be to contact your local hospice, they often offer a variety of services or know where they are. The Bloodwise website has a lot of info about fatigue. It also features often on this community forum. Again a lot of cancer websites have information on fatigue. My fatigue comes on after I have overdone in emotionally or physically. What overdoes it for me is very personal for me. I do not deal with what personally stresses me well, itâs just all too much. My fatigue can come on immediately or up to 48hrs after I have overdone it. I am a girl for a nap and rest, but not to wallow, personally I find fresh air, gentle exercise and interaction with people helps. Take care and be kind to yourself.
Hi there
Thanks for your replyâŚYes I see my heamatologist every 3mths so could ask him about MacmillanâŚI will also look on the bloodwise site and see what it saysâŚI do work alot of hours but I have to bieng a single mum and to be honest my job keeps me goingâŚphysically and mentally although it is a very stressful job at timesâŚnow I have my support from my manager and my shifts are bieng altered so I am having a break inbetweenâŚgoing to see how that works outâŚI do suffer from anxiety and that in itself is drainingâŚplus i am overweightâŚI do think stress is draining tooâŚnotice my hair falls out alotâŚmaybe I need to spend more time on me rather than everything else going on around meâŚ
Hello. Iâm a newbie here. I was diagnosed with Myeloma in July 2018. It came completely out of the blue. Iâd never even heard of Myeloma and it took weeks before I found out thatâs what was wrong. It started very suddenly waking up with a back pain. I went to A and E, they prescribed pain killers. This got progressively worse until my mobility was so bad that I got an ambulance organised to admit me to hospital. They pumped me full of high dose pain killers all night then sent physio round to get me to walk. This seemed to do the trick and they sent me home the next day. Within hours though it started to get worse again and a week and a half later my GP organised another ambulance to get me admitted as he was so concerned. This time I found my treatment by hospital staff much less sympathetic. They put me in a chair to wait which made my back bone collapse and dig into my spinal cord which took away all the feeling in my legs. The hospital told me they didnât believe iâd lost the feeling in my legs and I should get up and walk as they werenât going to help me. Eventually I had to use a chair and a wheelchair to roll onto a stretcher by myself. Next morning they used the same strategy. The same physics were back and they tried to force me out of bed even though I told them I couldnât. They said that was rubbish and they would discharge me whether I could walk or not as there was nothing wrong with me. Luckily for me one doctor over ruled them and ordered an MRI, not because he thought there was anything wrong me but because he said he wanted to prove to me nothing was wrong so iâd Cooperate. The scan showed I had a fractured vertebra and various tests showed it was caused by Myeloma. Suddenly everyone stopped being nasty and told me I had to lie flat on my back and doctor would explain everything. I was transferred to a proper ward in the morning after an uncomfortable night on an air mattress that deflated and a horrid thing called a confine that I donât want to describe where it was attached but was designed to allow me to empty my bladder but kept falling off so eventually they let me use a bottle. I was in hospital for 9 weeks during which time some of the nursing care left a lot to be desired eg putting my food next to urine bottles and knocking them so it spilled, recording on my drugs chart that iâd had my drugs even though I hadnât. I had 2 weeks of radiotherapy at another hospital which required me to be ferried there daily in an ambulance and then got treated quite badly by the building manager at Guys who insisted that I had to be taken up in the goods lift rather than allowed through the main entrance because it distressed the private patients. I began 6 months of chemo straight after and intensive physio using a back brace to learn to walk again. I came through both far better than anyone expected and far quicker. I returned home in September with adjustments and within weeks was back at work even though I had to go through an apparently difficult to arrange occupational health appointment at work which delayed everything 3 weeks. Just after returning to work my mom died unexpectedly and work gave me two weeks compassionate leave to go up to Birmingham for the funeral and to help sort through her stuff. Somehow everyone in the family made in to the end of 2018. My sister and her husband had also both had cancer in 2018 and my chemo came to an end just after Christmas. I also turned 50 at this time to further mess with my head. Doctorâs had been strangely uncommunicative throughout. I hardly saw anyone except my chemo nurses after leaving hospital. They mentioned this bone marrow transplant procedure but didnât explain what was involved downplaying the whole thing. I looked upon 2019 as a fresh start and started making plans, booking trips away almost every month and then soneone told me what was involved and the likely timescales and all that new start was over as I realised my forthcoming treatment was going to be far worse than what iâd undergone in 2018. This is likely to mean a while off work again after iâd settled back in. My employers sick policy is harsh. If youâve worked there less than 3 years you get only 3 months full pay followed by 3 months half pay. Iâve only got a month half pay left to see me through the next wave of treatment which begins in March so will have financial difficulty as well as coming to terms with what looks like a horrendous procedure over several weeks. My immediate bosses have been supportive allowing me to phase in my return to work but they canât do anything about the sick pay position. Ironically my third anniversary would be this yearâŚlots of people visited and helped whilst I was in hospital but when I came out I found that they pretty much disappeared. I think I found it difficult not speaking to anyone who had been through the same thing so have located a support group but there isnât one close to me, iâd have to travel a bit to get to one. So thatâs me at the moment. Things are very complicated right now and this looks to be a messy year again.
Hi Franco, thanks so much for posting what has happened to you. It sounds as if you have been through a really scary, isolated, painful time. I am so glad you have found this community forum, I hope you find it informative and supportive. Donât forget the Bloodwise Support line is also there for you, the details are at the top of this page. Also the Bloodwise website has information about Myeloma and itâs treatments. The Macmillan charity, which is based in some hospitals, or the Citizens Advice Bureau might be able to help on financial issues. Please keep posting and let us know how you are and whatâs happening, take care of yourself.
I read your story Franco and Iâm absolutely appalled that anyone could be treated so badly.
For the hospital to think you were faking it just beggars belief.
You are certainly not getting the support you need and deserve.
Support is available for you via Macmillanâs Support line, itâs a freephone too.
You may qualify for a grant to help you if you are financially strapped, the support nurses are wonderfully supportive too. Great listeners and advisers on all difficulties we cancer sufferers have.
Give them a call 8am to 8pm Monday to Friday.
Number to call 0808 808 00 00.
Youâll be pleased you did
Good luck and best wishes
Anthony
Hello @Emmaco, this link below will take you directly to their website on fatigue.
https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/tiredness
Thank you for the welcome Joshua 
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Hi Franco. Wow your story sound horrendous you should have made a formal complaint about your treatment to the medical health board but I suppose that would have been the last thing on your mind when you are going through something like this. I really hope you get the support and treatment you deserve in the future. Good luck