Suspected HL

Good morning Kate - what to say? I have just fininshed 4 years of treatment for HL, awaiting a scan to see what, if anything, next. I know what is next, my 79th birthday in April.

I just cannot comprehend the position that the pair of you are in - it must seem very bleak no matter which way you turn. So what I am going to do is to put myself back in my old career as a social worker, include my cancer experience, and try to offer some ideas which may minimise the stresses in your household. Of course I don't know where you live and thus what resources are in your area, so very generalised words,

Firstly, and I cannot stress too highly, the medics are on your side and will try hard on your behalf. The clinical nurse specialist(s) attached to your hospital unit will support you both and are very approachable. If you haven't met them already, make yourself known to them. They have a wealth of knowledge and experience and act as a link between you two and the unit.

Lymphoma Action charity has a wealth of knowledge and run support groups- their website is well worth spending some time on. I am a member of a monthly meeting and I find it most encouraging.

You must take care of yourself! So if you get an offer of respite, be it an hour or longer then grab it with both hands. Do not feel guilty - putting it in plain language - if you go under then you won't be in a position to support your beloved husband. Then what? And I speak from personal experience - my wife died from a brain tumour. Who ever invented cancer . . .

What dementia support groups are in your area? I know it can be offputting to join a group but jump in there Kate (lovely name by the way- my mum's) - just sharing can be so beneficial. And could your husband join a day centre? Have you a social worker? Some of us (he said modestly) are lovely and are on your side and should have knowledge of local resources. Be sharp elbowed- push to get answers- never take no for an answer. Remember the expression to a negative answer from a professional "If you were me, what would you do next?". Professionals must give a response. And if people ask you how you are feeling, tell'em. Be open and you never know what you get back in return.

Finally ("hooray" I hear you cry) don't forget laughs and hugs essential. My wife and I always had a laugh whenever we could over the 17 years with her situation including losing 90% of her sight e.g. getting in a stranger's car, falling down the town hall steps dragging me with her and when people rushed to our aid, what did she say?  "Its been some time since I had a man on top of me".

So Kate, best of gentle luck on your journey and have a long distance hug from me,

Pete X

Kate- forgot to add- is there a Maggies in your area?. These are wonderful centres offering support to friends and families and the individuals with cancer.

Have another hug

Pete X

Hi K4te and a warm welcome to this corner of the Community although I am sorry to hear about your husband. 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 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

This is a very challenging journey for you made more so, due to your husbands dementia but also his heart issues…… these chemo regimes are strong, even the less intense treatments will have level of toxicity that will bring some Side Effects.

I have been helping on these groups for about 7 years and there have not been many people pass through the group who is dealing with the exact same challenges but let’s see who is looking in.

You may want to have a look at the communities general Carers only support group where you may connect with members navigating the exact same dementia support challenges.

I also volunteer for Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms both for patients but more importantly for family and caregivers..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where they can try and link you up with a caregiver who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Always around to chat and answer questions as best as I can ((hugs))