My partner was diagnosed with Hodgkin’s lymphoma in February 2019, he has just finished his 6th cycle of ABVD Chemotherapy, and currently we are waiting for his PET/CT Scan at the end of this month, he is still very poorly.
Before diagnosis he was full time working as a commercial/domestic Gas engineer, so his wage was very good, I worked part time and we both have several credit agreements that were affordable before cancer hit us!
He is only entitled to SSP from work, I have had to take a sabbatical to care for him and our children so I am currently not earning. Our bills don’t stop!
We have had to claim universal credit, which in all honesty is an absolute Joke, we started claiming in April, and he still hasn’t had a limited capability work assessment so isn’t receiving the extra he should get for having cancer! They messed up his earnings for July reporting that he earned way more than he did using the Real Time Information (RTI) system they use between his employer and HMRC, which has left us with no benefit for August. His work have paid him full wage for August as his sick note wasn’t sent in by his boss, which in turn will affect next months benefits but work want this money back! I am just so stressed with having to sort all of this out as he is too poorly but he still is depressed with the whole situation as I am. We have 3 children and have struggled massively with sending them back to school with uniforms, shoes and the rest! We are just about to run out of Gas and Electric in our meters! And have no shopping left! I don’t know what to do? I’m ringing the benefits every day but nothing happens?? HELP?
Hi Jo78 and welcome to the Online Community, although I am sorry to see you finding us.
I am Mike Thehighlander and I am dropping in past from our Lymphoma Forums. I have lived with my rare type of NHL for over 20 years so I do understand where you are coming from. HL - ABVD is hard work so I am not surprised he is poorly and are facing the challenges you are having.
If you have not done this already, you need to talk with a Maggie’s Centres, a CAB office or check to see if you have any Local Macmillan Support centres in your area to check that all that is available you are getting. These folks can also help you navigate the mess that comes along with a cancer diagnosis.
You may also find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
Can I direct you to this link to our Hodgkin lymphoma Forum where you will connect with people who understand the journey you are both on. You can ask the folks questions and what to expect during the months ahead.
Follow the link above and join the group by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.
Go to the 'Start a Discussion' tab just under the main group name and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.
We do have these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum and Friends and Family Forum
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
All the very best.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thanks Mike, I will click the link to HL forum. I have looked into the CAB and there is a Maggies centre very close to us who helped with our initial benefit application. I suppose I’m just so frustrated with the whole benefit system with cancer. I can’t actually believe the hardship they put you through when facing this awful disease, I think when the diagnosis is made and you have to claim because of cancer there should be a benefit in place for cancer and it should come automatic! In an ideal world eh!
Thanks for your reply and I hope your managing with yours as well as you can.
Hi Joanne, I am 4 years out from my last treatment (Stem Cell Transplant) and am doing great. But I do understand the challenges that do come along as I ended up in a wheel chair after my last treatment.
You do need to get help from those who understand how to push the buttons. Maggie's were great and we had to get regular advise to get all that was available. Our circumstances are complexity different from yourselves but the financial challenges are still as real.
I see that you have just found the HL Forum so I will drop in past and say hi.
Please phone the support line as they may be able to talk some stuff through with you today and this may help get that whirlwind in your head to calm down a touch.
Thanks Mike I will, I am going to a drop in session on Monday at CAB hopefully this will help. So pleased your doing great!
I'm having terrible problems with universal credit, I've run out of money now am single and private rent. I normally work full-time. I had womb cancer opp in April and radiotherapy in June. They will not pay me the extra for limited capability. Macmillan have taken on my case but still have had no joy. She has used my journal as a plight to hi light why system doesn't work. However still don't have enough money coming in. I will be forced to return to work early. This is so stressful after everything else
Hope for the future and living the best life I can
Hi Rossanna, I completely get this, the whole system is disgusting and needs a serious change, as if there isn’t enough to worry about! So we shouldn’t hold out much hope for the limited capability to work element? I just hope that when my partner has his scan on the 23rd it’s all good, but it’s still not a quick fix as it will take months even years to recover from the chemo.
Wishing you lots of love on your journey!
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