18: Year 4

So we move on to my 4th year which is not too bad at all, I never thought that I'd make it out of Year 1 so what's not to like 😀👍

When I originally signed up with the web services for this blog I was offered two choices, a one year contract or three years. At the time I really could not see how I could survive brain tumours so I almost signed up for one year but eventually signed for three years. I have just renewed for another year. We progress. In fairness, whilst I do try to remain positive, in May 2020 I really could not see much positivity but once I got through the brain surgery I felt invincible, well I did till I went to Bristol but that's a story already told

I'm not even sure where to start with this month. The 15th of May is my cancerversary, three years and seems to me to be getting more and more confusing. I have been in or to hospital so many times in April and May that I have lost count. I have been off Dabrafenib since 28th April and waiting to go back on them asap. To help with the heart issue my Bisoprolol has been increased to 2.5 mg a day, I have no idea if this is helping or not. I feel awful most days, my breathing/ breathlessness is becoming more apparent each day, just going upstairs at home knocks me out and my fatigue, which seems linked to the breathlessness, is getting worse. We went for a walk yesterday to get the Sunday paper, there and back is about a mile. When we got back I had to go for a snooze and managed three hours sleep and that is after eight and a half hours  Saturday night.  Last week Aislinn and Saoirse were down visiting and we went to Bucklers Hard on the Beaulieu River, one of my favourite places and somewhere we used to Kayak back in the day. I managed about a hundred yards and had to go back to the car.  Annette dropped me  home and I went to sleep for a further two hours. Last Saturday we had tickets to Saracens -v- Northampton, Premiership semi final and I backed out, I could not face a long day miles from home. We stayed at home and watched it on TV. 

I had another Echocardiogram on 4th May, essentially no change since the last one which I assume is a positive hopefully.

I got the go-ahead to go back on the Dabrafenib on 10th May, so far so good and only one night waking up aching all over

So here we are, three years further on down the road and whilst I am chuffed that I have put up with three years I really do feel mentally and physically exhausted. We have another appointment shortly so we'll see what happens then. 

 

I have really been struggling to update this blog (yet again), in reality, there has been so much going on, I can't keep up! During May I had a blood test every week with varying results. After two cancelled appointments I finally got my appointment with Dermatology on the 9th May to discuss the rash that I no longer had!  That didn't help much then.  But on the bright side the rash has gone for the time being. 

On the 18th May I was advised to stop taking Dabrafenib again as my blood test was still showing an impact to my kidney function. I had to book another blood test for the following Tuesday to see if not taking it improved my kidney function.  It didn't so I was asked again to remain off the cancer med. In truth I have almost been without any cancer meds since the middle of January in preparation for the  SABR Radiotherapy. Not ideal. I have a further Oncology review shortly, and a blood test of course! 

Anyway, it's a Bank Holiday weekend in the UK, the weather is amazing, non stop sunshine. Siobhan and the girls are down for the weekend and they've picked a fantastic one. Yesterday we went for a walk around the Eling Board Walk then out to Goatee Beach on the River Test. Niamh thoroughly enjoyed herself throwing stones in the river. I had a great time watching her and doing nothing too much at all.

https://www.elingexperience.co.uk/walks 

Probably walked about two miles, very slowly, and I was knackered (again). Anything seems to make me tired so I guess I just need to manage this as best I can as I'm not too sure that it will get better but I'll try. Anyone I discuss cancer recovery with will say the same thing, cancer makes you constantly fatigued, don't fight it, your body is using all its energy and stamina fighting cancer. I'll hazard a guess and state that my fried Adrenal glands probably wont help much either.

1st June I had a CT scan at 09:00 and an Oncology review at 10:40. We discussed my continued issue with breathlessness and fatigue. After a review of my current daily meds it was suggested that I stop taking Tamsulosin and Piriton and review. Removing the Tamulosin has been positive as my breathlessness has eased, still there but not as bad.   6th June I had my Covid booster, no impacts at all. 12th June, another blood test followed up with a further Oncology review on the 14th June. Good news/ bad news type of review. CT results show that my Pancreas Tumour is not growing, no change so it appears (hopefully) that the SABR is doing its job. The strange swelling over my left shoulder/ bottom of my neck  looks like nothing to be concerned about at all. However, there is a tumour growing on my Adrenal gland and had increased in size since the last scan. We did agree that I would resume my interrupted journey with Dabrafenib. As we were away over the following weekend till late on Monday we agreed to postpone this until Tuesday 20th June. Now, two days later Thursday 22nd the rash has reappeared in the middle of my chest, it is slight, but there under the skin. We'll need to monitor if this carries on, for now I'm still using the prescribed lotions and potions to see if it helps.

We went to the Black Deer Festival again this year, three wonderful days of music and chilling in the Kent Countryside. Perfect weekend. Highlights were Steve Earle, Bonny Rait and Lucas Nelson, excellent. The weather was fine apart from Sunday afternoon, just when Steve Earle come on it started chucking down. It's never great at festivals when it rains but not too bad and it did clear later on.

We had accessible camping at the festival which was really useful as we had a greatly reduced walk to the entranced a much quicker checkin as well (took ages last year in a heatwave!). Anyway camping was on a hill, a very big hill. Even with the chocs on the front wheels the van was on a ridiculous angle pointing downhill. On Saturday everyone was wandering around asking if anyone's fridges were working. I never knew this but campervan fridges do not work at an angle. By Saturday afternoon everyone was throwing away food (it was hot). Maybe they just want you to but food from the concessions. Sleeping at the strange angle was interesting as well.

June is my month for my year Endocrinology check in. Just a telephone call and never one of those calls that tend to cause anxiety.

 

It's June again so time for the Grateful Dead T Shirt pic

Nearly forgot. June was a cracking month for new releases! Lucinda Williams, Son Volt, Jason Isbell and Bob Dylan. A bit like waiting for a bus and a bit of a strain on the wallet :-)

Back to July and a call from Cardiology to discuss my heart issues. The short story is more meds recommended to assist with my breathlessness. Spiranolactone and Dapagliflozin. I received a call from my GP to make an appointment to discuss along with the additional med prescribed by the Endocrinologist to assist with my dizzy spells.

We met with my GP at the end of July to discuss. He went through my long list of meds, very thorough. In fairness this was the first time my GP had gone through my list of meds as most had been prescribed by the hospital. His preference was to take it easy and review later in the year so he only prescribed one for the time being, Dapagliflozin. One a day in the evening. Possible side effects are that it may lower your heart rate and interfere with your blood sugar so monitor. No impacts so far and my heart rate and blood pressure seem almost normal for a change

For the first time my Testosterone is looking good. HbA1c not so good and gone up again, up to 55. This was discussed but not seen as too big a problem. If this should become an issue it can be managed by more meds so not ideal and I need to keep take this a lot more seriously. That's for me to deal with.  One other thing relating to my dizzy spells, I have been prescribed another med to assist the spells but more on that shortly.

Things seemed to get busy moving into July another Folk Festival for five days, amazingly I managed to keep the dates free is a month of appointments. A few blood tests to check on the kidney function. So after a blood test I was told that due to my kidney function I need to stop taking Dabrafenib drink more water then repeat the blood test and if all OK then restart which thankfully was the case and now on Dabrafenib since with no issues so something is working!

Squeezed into July as well was another Head MRI. I still look forward to these as my biggest fear through all of this is that the brain tumours will return. Fortunately nothing again. It will be two years clear at the end of November. I'm still very unsure as to whether I should apply for my driving licence back. I haven't missed it to be fair although it has restricted my independence, not that I'm looking for adventures on my own anyway.

August was thankfully a quieter month with only a blood appointment and one F2F with Oncology in Southampton and all in all no highlights now the the blood/ liver function issues have settled down. Progress.

August is a month  we look forward to as it's Purbeck Valley Folk Festival, always a good Fest with cracking bands. A special mention for a wonderful band from Sheffield, the Fargo Railroad Co, awesome live and we'll have to keep an eye out for them in future . Also, Man The Lifeboats. well worth a listen. They are both on Spotify so give them a quick search, you'll enjoy them. For a change we were unable to use our camper van, it was in fro repair awaiting a part from Germany so we had to get a AirBnB in Swanage which was lovely but strangely, as we had to drive in and out everyday we didn't feel connected in anyway to the festival but still had a good time. One issue for me is that I struggle to stand for any length of time now so use my fold-up festival chair. Unfortunately for me they do not like chairs etc in the evening which I understand, however I had to keep moving around and the alternatives were not great if you wanted to see the bands as well as hear. We'll probably not return which is a shame but it is becoming more difficult to move around easily and the festival is in a valley so a few up and down walks as well to be getting on with.

Links below

September got things going again with my quarterly CT scan. The results were somewhat sketchy. The tumour on my Adrenal gland has grown but the size is not determined, the results on the Pancreas are similar. I'm not sure how this will progress but something needs to happen. I had my yearly T2d eye test at the end of September, it seems that I have a cataract growing on my left eye. That possibly may be viewed as positive as my left eye vision appears to be getting slowly worse which I had wrongly assumed to be related to the Tumour that was removed in 2020 which was growing on my left eye optical nerve. It has not been very good ever since which was concerning as that may be irreversible.

Three and a half years too late, I decided that I really should be visiting support groups.  We had first spotted Maggie's in Oxford whilst attending radiotherapy sessions and on our return found there was a branch hidden away at Southampton General.  We dropped in for a chat with the team who were really friendly and inviting and I have since attended their 'men's  group' which involved scoffing a nice cooked brunch and meeting new people.  They mentioned the Wessex Support Group which is more local to me so I popped in there recently.  They too were friendly, informative and inviting.  I have since attended a massage and Reiki therapy with them - which were  very nice and relaxing.  I am booked to go to their men's group, for the first time, tonight.  I'll update you next time on this.

 

Not finished yet by a long way. More to follow shortly.....