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Blog of a wife trying to cope. My 37 year old husband was diagnosed with grade 4 Hodgkins Lymphoma in June 2014, he is currently undergoing escalated BEACOPP treatment.
I've just logged on for the first time in a year and a half. I didn't realise it had been so long. J is currently officially 3 years in remission - more on that later, but an update on the last year and a half first.
I think last time I wrote J had an unexplained circular rash on his leg and we were about to go on holiday. The rash went. The saltwater and sun must have done it the world of good and following that it never reappeared and he had a long spell of good health.
In 2016 he got really fit. He cycled the Coast to Coast route in a single day to raise money for Bloodwise. Me and the boys joined him a couple of months later and we all did the Coast to Coast in 3 days. It was a really great experience for us to feel fit and strong together and also to give something back to Bloodwise.
2017 was J's favourite year ever I think. We found out last January that we were covered for his Hodgkins on our critical illness insurance. I must have been so strung out that I read it wrong when he was poorly. I was convinced we weren't covered, but we were, and they paid out without argument after 3 years. We are now mortgage free. The most amazing, liberating, wonderful thing to happen. With the money J started studying to change his job. He has got a qualification now and is looking to change direction. We also had 2 great family holidays. We went to Scotland in May and climbed Ben Nevis, and in August we went to Spain and stayed in a beautiful villa with a pool. It was the most perfect week ever in the history of the world :-). J also fulfilled his bucket list wish later in the year and went to Denver to watch the Broncos play. He loved it.
Meanwhile, his health has taken a bit of a dip. He is now on 6 month check-ups with his consultant. Before his last one in July we were a bit worried because he had been off it, non-specifically but regularly, but we were pleased to see that his levels were all fine except for bilrubin (which has been raised before and his consultant doesn't seem to worry about), and we skipped out quite happily. But since then things have slipped more. He has had cold after cold, a twinging back, a chest infection and various bouts of diarrhoea. The last bout lasting 4 days. There are a lot of bugs about and we put it down to that. But me and the boys never catch it, and poor J seems to go from one thing to another. This is very reminiscent of when he was first diagnosed. Last night he broke down in tears because his back his hurting in the same place as it did when he had his tumour and his sciatic nerve has started to play up. Although he has had back issues whilst in remission, the sciatic nerve only ever caused him problems before he started chemo. He says he thinks the cancer is back. He always said he would know. We are terrified. As luck would have it, it is his 6 month check up tomorrow so we will see what the bloods and his consultant say. Not long to wait. Part of me wonders if this is psychosomatic with the worry of the appointment looming. He doesn’t have the weird colour he had when he was unwell and he doesn’t twitch in his sleep. Maybe he will be told that is all is well with the bloods and he will skip out of there again saying “bloody disease, makes you paranoid” and we will carry on living happily ever after. Or maybe we won’t and our luck is up. I can’t begin to say how much I hate this.
I think this disease does make you paranoid. I had a mastectomy in Oct 2016 for a recurrent breast cancer & this Winter I have felt so very tired. All follow ups look good....so I'm thinking I'll pick up in the Spring.
I hope you get good news for your husband. It sounds as if he is a very positive person & I believe that aids in healing.
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