It’s been awhile since I was last inspired to write. I feel like I have been living in limbo, a bit stressed, a little anxious and I guess if I am honest, a little depressed! All part of knowing that the next step is a major one, at least for me it is. No way am I even close to being back to normal now even though I do feel better than when I last wrote after my stem cell harvest in early April. I still can’t properly feel the soles of my feet or walk properly and did I forget to mention swollen ankles aka cankles lol!
So what’s been going on? I have been waiting to be seen by the Lymphoma team at Macmillan to have some tests on my heart and kidneys so they know that I am going to be able to handle the intensive conditioning chemo they plan to do for 5 days prior to performing the transplant. Navigating the health care system can be tricky at the best of times and even though there are bumps along the road, I have met some amazing people. My appointment has been delayed 3 times, each time by a week. Nothing unusual but The mind starts wandering and I really don’t think I did my homework on this one. Although the entre procedure takes about 5 weeks it doesn’t really end there unfortunately.
Apologies to anyone having been in contact and awaiting replies from me lately. I just haven’t known what to say or been able to talk about my feelings. Cancer is a bitch, and I have said this many times before but it is literally soul destroying. You still have to look at the bright side of things, enjoy time with those you love the most and appreciate the time you have together. I am very lucky have such an amazing husband but this is not easy on him and I know that it has affected him so much more this time around. It makes me so sad that he ended up having to deal with cancer not once but twice. I am luckier than many people as there are those in far worse situations than I am. Some people don’t even make it through their battle.
Life is all about choices and I for one have not always made the right ones, as I am sure many of you can relate. Nonetheless, we have to live with the consequences of our decisions.
I got a call a few weeks ago and it was once again delaying my appointment and it really made me start thinking of what this next step was going to be like. I just said STOP, I am not sure where that came from but I was determined I needed to think carefully about what I was up for. That night I took my laptop to bed and starting researching stem cell transplant and all the possible things that could happen along with all the side effects. That was an interesting read NOT! 3 months isolation, no visitors, no pets, possible permanent side effects and up to a year to recover. I never realised it is like being a baby again as far as your immune system is concerned. You even have to have all your childhood vaccinations again as they are completely wiped out.
After making that decision I thought, ok, I’m done with this. Is it selfish, perhaps? It is after all me having to go through this, but I didn’t realise the impact if would have on Nathan. I actually made him cry, and that really resounded with me. What had I done? It was not my intention to give up or just pretend this couldn’t come back again, but I just couldn’t see myself going through this next phase of treatment. It’s a huge commitment and requires a huge amount of sacrifice. I am in a hurry to get back to myself again and sadly there is no fast track option.
Almost a week passed and a I then received a call from Karen Maloney. The tone of her voice was so sad and she could not believe I had decided against the stem cell transplant. I just couldn’t believe someone you hardly know would be worried about you. I was extremely touched and at the same time Karen was dead honest, which I will always appreciate. I was telling her that I already felt like damaged goods after treatment and she said you are damaged goods and there is no going back. There is however a much better chance of stopping another re-lapse by going ahead and buying more time if that makes sense. In my head I thought I beat this before for 5 years and I had at least another 5 years before having to worry about it again. Karen was like what if I told you it could come back in 6 months. That was very thought provoking.
Dr Gohil, my new consultant on the NHS also called me around the same time. As much as he respected my decision, he just wanted me to know that if I didn’t go ahead that treatment options in the future would be very limited. There is no guarantee with having or not having the stem cell transplant. So back on the fence I went.
Dr Kyriakou called me out of the blue last night and she too was invested in my going ahead with this 3rd phase of treatment. She said I know Karen has been twisting your arm and now I need to twist the other! She had spoken to my new consultant and he had told her I didn’t want to go forward but she told him, Mark will go ahead, even before speaking with me. Got to love their determination! She said you are two thirds of the way there, almost at the finish line.
So apart from all that work has been mega busy and spending time with my boys when I can is pretty much my life at the minute. I can’t not think about what if? It’s all I think about. So I think it’s fair to say even though I am not looking forward to any more invasive treatment, I am going to have to bite the bullet and just do this. I really don’t fancy doing this all over again in the future.
Until next time!
Much love ❤️