Please introduce yourself

[JohnM]

Well done Boony on reaching the cancer-free milestone.  It can be a long process.  The challenges that face us in adapting to the "new normal" really keep us on our toes.

I have always considered that I have been extremely fortunate in my journey in that I had no real medical type complications during the time.  I genuinely feel for anyone that has had serious complications on top of the general recovery.  Radiation was very uncomfortable but incident-free, chemo made me sick, particularly the last one - spewed for a week then spent the weekend on a drip.  Relearning to eat was a challenge and took a number of years before I was close to the situation pre-cancer.  Suffered hearing loss due to the Cisplatin and now wear hearing aids.  I still get tired easily but am trying to exercise more.

With regard to tips, keep up with the lympho massage, it needs all the help it can get.  Work hard on swallowing exercises which will aid your eating  - Speech Pathologist is good to get on to for this.  I always have a drink when I eat and plenty of sauces and gravy and a lot of mashed potato with meals.  Rare steak because it stays juicier longer and is easier to eat for me.

Keep on working hard and look after your support team - they deserve to be immortalised in gold.  I had my wife helping me on a daily basis and other family helped with shopping and transport ad other things.  I had the opportunity a few years ago to return the help to my wife as she recovered from breast cancer and surgery.

Good luck 

John

[Marg3]

Hi ,

My husband had a mole removed in February, 2017  and was told that, despite the fact that it was cancer, he was one of the 'lucky ones' because he would be monitored from then on. No monitoring took place (was that our fault or someone else's?) and in September he was diagnosed with stage 4 Melanoma with tumors in his lungs, liver and brain. Then began 9 months of hell; inhibitors that gave him jaundice ,immunotherapy that didn't work, more inhibitors, more immunotherapy and then his death in July 2018. Please don't misunderstand me - I'm not looking to blame anyone for the fact that his treatment didn't work. it was a miracle that they kept him alive for nine months considering his condition. But I do question the lack of information and monitoring after the initial mole removal. I constantly beat myself up - 'if only we'd ...'

But we assumed it would be initiated by  - who knows? his surgeon,  whoever held his data...?

I just hope that want happened to us can be prevented for others with better protocols.

It won't bring back my amazing husband who's absence is an ache I live with every day but my thoughts here might get someone thinking...

[DaveT]

Hi, 

I'm David, and I was diagnosed with stage 3b Hodgkin Lymphoma in June this year, and currently am in my third cycle of chemo. Apologies for the long post, I am a bit of a story teller....

I consider myself to be extremely fortunate, which may seem strange after a cancer diagnosis, but I have many things to be positive about.

Firstly, Hodgkin Lymphoma while both rare and malignant, is generally well understood and known to respond well to the established treatment regime (ABVD chemo). It also responds very well to newer immunotherapy treatments.

Secondly, I am extremely lucky to be married to a senior Radiation Therapist with 25 years of experience, although she is not happy about being on the carer side of cancer treatment rather than on the treating professional side! This means that we know a lot of the people in the local cancer care centre personally, and while I don't expect any special treatment, it is reassuring to be dealing with people who know you.

Thirdly, my treating Hematologist is held in very high regard by all who have dealt with him, he calls a spade a spade, and is approachable, thorough and caring. I am able to talk with him frankly and comfortably, and be my own advocate without upsetting anyone.

Finally, I appear to be coping with chemo reasonably well, no nausea or vomiting, minimal fatigue, no digestive issues, and generally ok most of the time. I am able to exercise and do so on as regular a basis as I can (this is really important to me as a part of my treatment).

However, I do get the chemo fog quite noticeably (I spent ten minutes walking around the house looking for my mobile phone, all the while talking to my mother on it...), and it appears my bone marrow is copping a hiding. I have been neutropenic and anaemic, and have had to have blood infusions and inject myself with courses of GCSF (stimulates the production of base white blood cells) to deal with this.

Whilst I am something of an optimist, I am concerned about my emotional state, specifically in relation to the effects of the treatment drugs.

Somewhat unusually, I haven't felt a lot of the negative emotions that a cancer diagnosis normally brings, mostly due to the factors detailed above.  I have lost my scalp and facial hair, but this doesn't bother me as I was fairly bald to start with, although I miss my beard which was a bit of a chin pet....

But I have been suffering from stress/anxiety related physical issues (which I have had intermittently in the past 20 years) to the point where I have been through the local emergency department three times in the last 2 months (2 admissions with no indication of any physical causes).

I have had to give up my part time work as a result of this as well.

I am seeking professional support through counselling, and I have had discussion with my GP regarding the emotional side effects of some of the support drugs (Dexamethazone in particular), but I was wondering if anyone has any insights into this side of chemotherapy at all?

Cheers!

☝️