Husband

Good morning Aileen - just switched on my laptop (and still in bed!!) and want to give a properly considered reply to your email which reflects something similar to me 3 years ago (and as you have guessed, I'm still here and feeling very well). So once I get myself sorted out I will put finger (only one) to keyboard.

Meanwhile all have a hug from me

Pete X

Hi Aileen Aileen22 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have Hodgkin lymphoma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma (Stage 4a) so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

The diagnosis stage can at times be long and very stressful. Lymphomas needs to be very carefully looked at to ensure that all the information is in place so the best treatment can be used. My diagnosis took a year.... so do understands this part very well.

Accurate Staging of Lymphoma is very important as this identifies where the Lymphoma is present, what is the best treatment and for how long...... but there is a significant difference in Lymphoma staging compared to solid tumour cancers staging like Lung, Kidney..... where a Stage 4 diagnosis often carries a poor prognosis........ in Lymphoma is not the same. Blood Cancers and Solid Tumour Cancers are very very different.

I was stage 4a back in late 2013 and although this meant that my rare type of NHL had become very aggressive a plan was put in place to deal with this.... after a few years of treatment with the final treatment being Oct 2015 I have been in remission since Sep 2016 and living as good a life as any other health 67 year old.

The early stages of the journey is a very steep learning curve....... you are most likely will be 'looking' for every Side Effect that is mentioned in the literature that he was/will be given and it all sounds so overwhelming........ but you will find it is so different for everyone.

I had a completely different very aggressive chemo (R-EPOCH) and like his ABVD?..... it was full on but honestly I did ok..... although I did go on to have many other treatments including 45 sessions of radiotherapy and 2 donor Stem Cell Transplants.

The toxicity of the treatment will develop over time so his body will take longer to deal with the toxins so side effects do tend to be accumulative but at the same time some folks find that they are able to deal with this better as time goes on - no one size fits all.

One VERY important thing he can do is drink 2 liters of water every single day during and between treatments as this is the main tool that will flush out the toxins and protect his kidneys. The other is to 'try' and keep some activity going as this will help reduce his muscle wastage and will actually help overcome some of the fatigue developing especially as the treatments go on.

The initial aim of treatments used for HL is to cure so keep that picture in mind especially when things get tough..... it is all about the greater good.

You may find this link Top Tips for the day of your Chemotherapy helpful to get ready for treatment.

The Risk of infection is real. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs. But the effects of the chemo on the growth areas and the general immune system will last for weeks and is important to remember that he may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest.

Our 4 granddaughters were under 7 during my treatment and they would regularly come an visit. We were just careful that they had no colds, runny noses, coughs...... washed hands, good ventilation..... but it's the same with adult visitors.....and I had no infections.

Back in 2013 to 2015 during my treatments we were wearing masks (before they became a thing) when we went to hospital, we kept away from crowded places but we still got out and about..... fresh air is good medicine.... we could always find a corner in a Garden Centre for a Coffee or Lunch

At the moment it may feel that this is an impossible task but keep your head down, keep pushing into the storm and you will get there.

I will always highlight the Lymphoma Action website (The bold links are taken from their site)..... Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars….

They run regular Lymphoma Online Support Groups for both patients and family and carers where you can 'actually' talk with others every month........ and a great Lymphoma Action Buddy Service where your husband can be linked up with someone who has walked the same treatment journey.

The group is always around to help out more, to answer questions or just to chat ((hugs))

Hello again Aileen - finally got my act together.

I am not going to repeat what Mike (TheHighlander) has stated but to add a few things from my experience and of course we can't turn the clock back and try to mitigate you and your husband's feelings when initialy "diagnosed". We had similar feelings when my late wife, Wendy, was suddenly diagnosed with a brain tumour in 1992 and lived with the "consequences" until she died in 2009 aged 70 - she continued working until she retired at 65 even tthough she had lost 90% of her sight. One thing she did teach me was panic when you have to and try to put what is happening into context - in fact on my headstone will be the words "What Now?"

A few things  (and where I refer to "you" this includes both you and your husband and the rest of your family- my son and daughter go "through it with me) - importantly, the medical people are on your side and have tons of knowledge and experience whereas for you it is all new and scary and your knowledge base is low. So use the specialist nurse(s) attached to the haemetology department - often MacMillan nurses. The are the interface between treatment and the consultant and can spend time with you to go into detail and offer support and put your situation into context. In my experience, at two centres ( in Oxfordshire and Kent), they are lovely people and an asset.

Response to treatment is very much aligned to the individual. I am on my third treatment regime spanning 3 years and I have been generally OK with them all - rarely physically ill. Two different chemos and now on immunotherapy. But at the beginning I asked the consultant "What would happen if I refused treatment" and without missing a beat, he said "You will die". So guess what I did - and I'm still here at 77 and volunteering weekly at a local heritage railway and involved in the community.

Is there a physical cancer support group resonably accessible to you? If so that could be another support. Remember- they all were once in your position i.e. newly diagnosed and apparently facing a very bleak future.

And don't forget the hugs!!

Take care and some hugs

Pete X